April 2010

I have to wonder how long this has been going on.  I wondered about it right after coming home from the hospital last November.  There were none of the usual symptoms that were different from the symptoms of the problems already diagnosed and being treated.  It seems unlikely to me that such an infection could have been going on since November, although there is a chronic version of this diagnosis.

Hospice Nurse Emily phoned shortly after lunch time today to report that Mary Ann’s urine had tested positive for a Urinary Tract Infection [UTI].  In fact it is apparently a fairly serious one.  She reported that the doctor had insisted that Mary Ann manage to get in both the morning and evening doses yet today.  We have now done so and Mary Ann is in bed.

The medication is an anti-biotic called Cipro.  It is a strong anti-biotic whose sheets of warnings and side-effects (three pages of small print) read like a Stephen King novel.  The good news is that the Hospice doctor has a current list of all Mary Ann’s meds and a chart that includes all her medical problems.  The Hospice Staff have regular Team meetings on each patient.  It is a fairly small Hospice organization, serving only about thirty patients.  We regularly get a copy of the Team meetings.  Each report includes hand-written notes by each member of the team, including the doctor.

It certainly is a challenge to discern the signs of a UTI when every one of them matches something that is normal for someone with Parkinson’s Disease, Heart Disease, Parkinson’s Disease Dementia (a Dementia with Lewy Bodies), Hypertension, Orthostatic Hypotension, Chronic Kidney Disease, Hypothyroidsim, Urinary and Bowel Incontinence, a stroke victim who has also had a life-threatening bout with Pneumonia.

Here is an interesting item on the list of those symptoms that are often indicators of a Urinary Tract Infection:  “Mental changes or confusion (in the elderly, these symptoms often are the only signs of a UTI).”  Imagine trying to catch that symptom in someone with a Lewy Body Dementia that has as its central symptom, mental confusion that comes and goes.

On the Medline Plus web site from which I got the information in this post there is a list circumstances that increase the likelihood of getting a UTI.

The following also increase your chances of developing a UTI:

  • Diabetes
  • Advanced age (especially people in nursing homes)
  • Problems emptying your bladder (urinary retention) because of brain or nerve disorders
  • A tube called a urinary catheter inserted into your urinary tract
  • Bowel Incontinence
  • Enlarged Prostate, narrow urethra, or anything that blocks the flow of urine
  • Kidney stones
  • Staying still (immobile) for a long period of time (for example, while you are recovering from a hip fracture)
  • Pregnancy

Mary Ann is not pregnant, does not have a prostate gland or kidney stones, nor is she diabetic, but all the rest fit to one degree or another.

I will admit that this diagnosis seems like good news in the sense that it provides a glimmer of hope for some positive change.  Mary Ann declined pretty dramatically after her hospital stay (during which a catheter was used).  It would be wonderful to be surprised by improvements coming with progress in treating the UTI.

Mary Ann (and I) got a pretty good night’s sleep last night.  She seemed to be doing somewhat better today but still had some confusion periodically.  There was a little more of the fainting and bowel activity.  She had a nap of a couple of hours during the mid-day.

We had a special treat today.  This afternoon Pastor Mike and Judy came to visit for a few hours.  They are warm and caring, as well as strong and intelligent people who have made their mark for great good in a central city area in Kansas City, Kansas that has had all the struggles that often come with older city neighborhoods.  I have tremendous respect for them as they have stayed engaged with and present in that community for decades.  Without fanfare or tangible rewards they have continued to serve in creative ways people sometimes gasping for air just to keep from drowning in a sea of failed attempts at trying to get by on their own.

We have known Mike and Judy since the early 1970’s.  I was a few years ahead of Mike at the Seminary we both attended in St. Louis.  Mary Ann and I have  listed Mike as the requested preacher at our funerals.  He and Judy have known Mary Ann since before the Parkinson’s.  As well as the personal fondness we have for them, they share with us an understanding of church that is deeply rooted in some core faith issues.  We have great conversations.  Judy especially made a point of talking with Mary Ann one on one, so that Mary Ann’s thoughts and words were not lost in the energetic talking of three others.

After spending time at the dining room table talking with Mike and Judy, we moved on to the deck.  It was a glorious day here, about 70 degrees and abundant sunshine.  As we sat on the deck, the pair of Mallard Ducks wandered back and forth, in and out of the waterfall, munching at the ground level platform feeder a few times.  They just sort of hung out with us, maybe twenty feet away.  The birds were singing their spring songs probably meant to impress some potential or current mate.  At one point a black Grackle (with that shiny deep blue head), Blue Jay, Cardinal and bright yellow Goldfinch were in view at the same time in the branches or on the ground in the immediate area.  A couple of Robins were nearby also, as well as the Mallards.  It always strikes me that colors no designer in his/her right mind would put together in the same space, work very well when in proximity in a natural setting. It would seem there might be some other artist at work weaving colors together.

Yesterday, our system here seemed on the verge of becoming impossible to sustain.  A good night’s sleep, some time during Mary Ann’s nap to get a few sort of recreational chores done (filling bird feeders, more weeding in the waterfall area), relaxed time visiting with good friends, has pulled us from the verge of impossible back to possible.  Since we live in a fairly small space between possible and impossible, I will not venture a guess as to where we will be tomorrow.  We will deal with that when tomorrow becomes today. Speaking of which — it is time to go to bed.

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.]

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.

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.

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[

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.

I guess I shouldn’t have asked.  It was my birthday treat coupon sent from Baskin & Robbins to me to print out from their web site – a free 2.5oz (Jr. Scoop) of ice cream.  I took it over and asked if they would bump it up to the 4oz scoop, since I was a good customer, loyal to B&R and had worked so hard to promote the newly opened store.

One of the two who run the store said that she could not do that.  I said I was sure she could just as a thank you for my marketing them so enthusiastically, up to even buying forty dollars worth of gift certificates right after they opened and giving them to others to get them to patronize the new store.  I didn’t remind her of it, but right after they opened, I also called the Staff person at the church responsible for Youth Ministry to relay that the other of the two who run the new B&R had indicated that at their other location they related to local churches. I told him that I had talked to the church and at that time he said he appreciated it.

She informed me that she always followed the rules, and bumping that up from 2.5 to 4 ounces would impact the inventory.  I said that I was not suggesting a change in policy, just an exception as a thanks for the support I had given.  She told me I could pay the difference (something around 50 cents if I heard her correctly) to get the larger scoop.  By the way, this conversation went on while Mary Ann was working on the two scoops I had gotten her.

I guess I was testing them to see just how custormer-friendly they were.  I was disappointed on that count.  She was absolutely within the rules and had every right to decline my request.  At the same time she certainly was free to choose to bump it up as a courtesy to a very good customer.  It seemed foolish to risk alienating a good customer to save their cost on 1.5 more ounces of ice cream.

When finally I checked out and paid, not only would she not allow the full scoop to be free, she wouldn’t do what I had understood her to say she would do, and just charge the difference in price between the two sizes of my single dip cone.

I feel pretty silly having gotten caught up in such a ridiculously tiny matter.  It is interesting to me how often very little things sometimes soak up way more  frustration than fits.  In walking through grief with people, it has happened that they have sometimes found themselves unable to cry until a sad program came on television or a pet was hurt or some little mechanical item at home stopped working, or the car wouldn’t start.  Sometimes the big things are too big to handle, so little things bear the brunt of feelings that have little or nothing to do with them. It is a way to release some of the energy that builds as huge challenges overwhelm.

While I have fun with our love of ice cream, Mary Ann’s weight loss is what triggered the move to Hospice Care.  We have struggled to find things that will help her stabilize.  The narrow range of what she will eat certainly does include ice cream.  I can get both of us out of the house with the promise of a stop for ice cream.  I suppose some of my fears about her well-being, completely irrationally, fuel my feelings.  The coping needed to handle 24/7 caregiving doesn’t leave a lot for use in dealing with the minor frustrations.

I am embarrassed to wonder out loud if some of my feelings had to do with the loss of influence when I retired completely from the ministry.  Maybe there was a little pain realizing that I don’t even have left enough influence to get a bump up of 1.5 ounces from a Junior Scoop to a regular scoop of ice cream at Baskin & Robbins. I certainly am profoundly imperfect.

On to what is really important.  Mary Ann slept well last night.  She was awake most of the day except for a comparatively short nap.  We had another bout with the combined fainting and intestinal activity.  It was not nearly as long and difficult as last Saturday evening’s battle. She went to bed at a normal time for her, and at the moment, she seems to be sleeping.

By the way, while I got pretty irritated at those who run the B&R, I am not going to  punish the two of us by not eating B&R ice cream any more.  I am annoyed but not crazy!

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 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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“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.

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This morning she said, “Let’s go some place and have some fun.”  Further interaction confirmed that she meant some sort of major trip this summer.  As we talked, she said, probably nowhere high [in elevation].  We had begun arranging through friends the use of a condo in the mountains of Colorado a couple of years ago.  After consulting with the Cardiologist, it seemed unwise to tackle a high elevation, putting stress on Mary Ann’s heart.

In the movies, a bucket list makes all the sense in the world.  Who could argue with doing anything and everything you have wanted to do before dying when death seems to be coming in the near term?  In the movies, whatever stands in the way can just be written out of the story line.

The dilemma in deciding what to do in response to the request for a major trip for fun, is that there are conflicting realities.  Each has validity.  One reality is Mary Ann’s view that is no longer reasoned through the executive function of her brain.  To her, the fainting, bathroom issues, problems with eating, falling, sleep problems, access to appropriate medical care, all are of little or no consequence.  She lives in a world in which she is constantly protected by those of us around her, taking care of whatever problems arise.  In that reality, there are no barriers to traveling wherever and whenever, just having fun doing all sorts of things.

There is validity in that view.  The various assessments of her physical/mental situation suggest that there may not be many years left to do all sorts of entertaining and enjoyable items on our wish list.  Assuming that is so, we need to get out and do anything and everything we can, as soon as possible.

The other reality is that we are on a roller coaster in which there is no telling if Mary Ann will be alert or completely out of it, whether she will be able to stay awake or will crash suddenly, whether she will be able to stand and transfer to the toilet stool or will crumple in a dead faint.  We don’t know if she will be able to eat or sleep or discern reality from hallucination/delusion/dream.  In the other reality, I am the one who has to figure out how to deal with whatever comes when it comes.  Not having the resources that are easily accessible here at home when problems come is a real issue.  This is not a movie.

The question is, how do we balance what is actually so in our little world with what we would like to be so.  My problem is determining how many of the barriers that I see are more my own concerns over what might happen rather than real barriers.  Now that we have made decisions associated with the transition to Hospice Care, the fear of not making it to a hospital in time may be unsettling, but it is no longer the primary issue.  We have already faced that demon and stolen its power.

I don’t want to stand in the way of Mary Ann having as good a quality of days as possible in these next months or years.  I also am not infinitely good and capable and strong and filled with limitless endurance for whatever may come.

In a recent thread of posts by members of the online group of Caregiving Spouses of those with forms of Lewy Body Dementia, there were some who talked about the struggle to do enough to provide adequate stimulation in their Loved Ones’ lives.  Some in that group have seen how others can draw the best out of their Loved Ones as they respond at a level referred to as “showtime.”  We have just come off three weeks of visits by friends and family.  Mary Ann has been at her best much of that time.  She has been engaged in conversation, she has laughed, she has connected and initiated interactions.  As Caregivers we want to provide that sort of quality all the time.

We can’t do it.  We can’t provide enough to compensate for their limitations.  Last night Mary Ann did not sleep well.  Today she made it through lunch, then crashed, fainting so much that she just had to lie down.  That was at about 12:30pm.  I tried to get her up two or three times, but it was 5:30pm or later before she got up.  We got some Dairy Queen, she came home and crashed again.  No matter how romantic it sounds to check off items on a bucket list, there are some parts of our reality that we can’t change.

For now, my intention is to think as creatively as possible about options for places that might be fun for Mary Ann.  I am willing to stretch beyond my comfort zone what we try to do.  She has mentioned the Quilt Museum in Paducah, Kentucky as a possible destination in the past.

…I have just been “scared straight!”  My comments above about two realities have just ceased to be a balanced weighing of conflicting views.  I have spent the last hour (not sure, lost track of time) in an intense battle with active intestines, in a fainting, jerking stiff body, fighting against every move to try to keep what was coming out off clothes and into its designated receptacle.

Mary Ann is only 113.5 at last weigh-in, but it took every ounce of strength I have to try to manipulate her into position, hold her up while trying to clean her up, while she would stiffen in a sort of mild seizure, or go completely limp becoming dead weight, all happening while trying to take clothes off or put them on or wipe off her body where it had spread or the toilet seat so that it didn’t spread again when she fell back down on it in a faint.

This was about as tough a time as we have had with that activity.  I describe out loud the difficulty I am having and my frustration with it as it is happening.  That is part of my getting out what would be tougher to handle if I tried to keep it in.  A couple of times when she happened to be conscious she told me to calm down. My most frustrating moments are the times her body is fighting against what I am trying to do to get her seated so it will go where it should go.  Once, she even said I should put her some place, to which I immediately responded, “I am not putting you anywhere!”

I have now rinsed the matter off Mary Ann’s pajama tops and bottoms in fresh toilet water, put them in and started the washer.  I have washed my hands fifteen times.  Cleaned the stuff from under her fingernails, gotten her in clean clothes and into bed.  There was one aftershock that included the fainting and all the rest except (gratefully) for the “stuff.”  She is again in bed.  I have taken a couple of Ibuprofen to take the edge off the back and muscle pain from the physical exertion.

You have just had a peak into something that is routine in the lives of many Caregivers.  Others in the online group have to do what I just did but with someone who outweighs them by a hundred pounds.  I have no idea how they do it.

Mary Ann will be fine; I will be fine.  It is just another day on our roller coaster ride.  This encounter with one of our realities has certainly suggested that traveling a long way may not be a very good idea.  It is hard to imagine doing what I just did, but in a motel bathroom.  At the moment, our bucket has no room for a list, it is full of poop.  Tomorrow is another day!

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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.

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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