April 21, 2010

Tired, Frustrated and Very Grateful

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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It started again last night.  This morning she was up at about 6am and hopelessly confused.  It was 4pm pill time (there never has been such a thing); she needed to make hamburger BBQ; those were the most lucid of the first words this morning.

I got her back in bed so that I could take a shower and get dressed to prepare for the 7:30am Spiritual Formation group that meets at our house.  As soon as I got in the shower, she started yelling for me.  I got out to see what had happened, and she just wanted to know where I was.  The shower is in the bathroom right next to her bed.

Moments later, she needed to go to the bathroom.  She had been to the bathroom just before I went in to take a shower.  It was tough just to get the preparations in for the Wednesday morning group, since she was in her streaming delusion/dream/hallucination mode.

I have been especially tired the last few days.  Today, I have not felt good at all.  Here is where the grateful dimension kicks in.  Volunteer Maureen arrived at 7:25am to spend a couple of hours with Mary Ann.  as always, she had a meal for the freezer, a couple dozen homemade cookies, Blueberry muffins and three very tasty Macaroons.

Maureen gave Mary Ann her yogurt and a muffin and kept her occupied while I spent a couple of very spiritually therapeutic couple of hours in the Spiritual Formation group on the back deck.

Bath Aide Zandra came and took Mary Ann through her morning prep for the day.  Parish Nurse Margaret arrived just as Maureen was due to leave.  Margaret spent the next two hours with Mary Ann while I did some morning chores.  During that time I gave Mary Ann her pills.  Margaret checked Mary Ann’s blood pressure (122/80) and her pulse (60).  I was reassured by the normal pulse after yesterday’s unusually rapid heart beat.   The BP would be great for anyone else, but low for her.  She had already done some fainting this morning.

Mary Ann settled into putting her head down on the table in front of her as she sat in her spot in front of the television.  During this same time, Kristie, who does the monthly cleaning, came and started her work.  Part of my chores on this day is to do the pre-Kristie cleaning up so that she can get to all the places that need cleaning.

I headed off for a short time to squeeze in a couple of errands.  At 11:30am Volunteer Doris arrived.  I got Mary Ann’s lunch.  She could hardly keep her head up.  Her nose was almost touching the plate.  She finally let me help get the food to her mouth.  She did not want to go in and lie down, so I moved her to her spot where she resumed resting with her head down.  I remained at the house, since Doris needs help moving Mary Ann.  After a while I was able to get Mary Ann to lie down in bed for a nap.  I set up the monitor so that Doris could let me know if help was needed.  That allowed me to read emails for a while, do a couple of household tasks and sit for a few moments on the deck.

Then Tom from our pest control service arrived to do his quarterly task.  While he was  here Volunteer Scheduler Mary came to spend two and a half hours with Mary Ann.  She brought Lasagna and bread for supper, along with shortcake, strawberries and ice cream.  There was also a large container of Mary Ann’s favorite, Ambrosia Salad.  During the time Mary was here, we spent some time talking about her ministry as a trained (two years) Lay Assistant at the congregation from which I retired.  I spent some time on the deck and then headed out to sit at Cedarcrest and try to nap while sitting in the van.

After I returned and Mary left, Mary Ann was still sleeping.  Neighbor, good friend and former Parishioner Ann stopped by to see the new sun room and waterfall as well as visit for a bit. After Ann left, I decided to try to nap a bit myself.  That lasted only a few minutes before Mary Ann finally stirred.

It was another very busy Wednesday.  I am profoundly grateful for so many Volunteers spending time with Mary Ann today.  Any times I interacted with her, she was still in the streaming hallucination/delusion/dream mode.  It helped to have others here.  Since she slept so much, it would have been doable, but it was a comfort not to be alone in the task.  I had a chance to enjoy talking with those who came, making my day better.  I need and love times of solitude, but I need human interaction just as much.  The Mallards came by for a while today also, filling my need for entertaining wildlife.

We had the wonderful lasagna meal and dessert.  I spent time just sitting with Mary Ann as she watched an hour or two of television.  Then she decided to go to bed.  After a day of sleeping, I am not sure it will be a very restful night, but I certainly need one.  I absolutely cannot allow whatever it is that is making me feel bad physically develop into anything that interferes with the functioning of our system.  The only power I have is to try to get some rest.  Otherwise, I am fully aware that I have very little to say about what does or does not develop.

I am trying to finish this earlier than usual tonight, so that I can allow more time for rest.  How much rest I actually get will depend on how Mary Ann’s 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.

 

April 21, 2010

New Twist – Hopefully Nothing Significant

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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Mary Ann lay down after lunch for a nap.  The moment she is settled in bed, I start doing tasks inside or outside, confident that she is very likely to sleep for a couple of hours without stirring.  Not so this afternoon.

When I came back in, her eyes were open.  She said that her esophagus hurt and she needed a Tums.  It seemed to be hurting more than usual.  She used the bathroom and had a fainting spell immediately after I put the Tums in her mouth.

The pattern we use is that Tums comes first.  If it does not help, a Nitro pill comes next.  If that hasn’t eliminated the pain in five to ten minutes, another Nitro pill is taken.  She has to be lying down for that since Nitro pills lower blood pressure dramatically.  Since she had just fainted, it was apparent that her BP was already fairly low.

Hospice Nurse Emily came to the door for her weekly visit as we were waiting for the Tums to work.  Mary Ann said that it seemed to be helping.  The new twist was that when Emily checked her oxygen saturation level (98%, very good) and heart rate with the finger monitor, Mary Ann’s heart rate was 111, almost double her normal, which is about 59 or 60.  Nurse Emily took her blood pressure, which was in a reasonable range for Mary Ann, 150/96.  It is always a puzzle that it can be that high just minutes after she has fainted from a drop in blood pressure.  She had stood up and sat down when the fainting happened, but she was lying down when Emily took her BP. Blood pressure usually measures higher when lying down than when sitting or standing for anyone..

Nurse Emily measured her heart rate a second time, and it had come down to 85.  After Emily left, Mary Ann said it was hurting again.  I gave her a nitro pill.  Her heart rate was over a hundred.  After a little less than ten minutes, her chest/esophagus was still hurting.  I gave her a second Nitro pill.  About ten minutes later I checked again.  By that time she said the pain had subsided.  I took her blood pressure at that time and it was 110/50.  As expected, the nitroglycerin had lowered her BP.

The concern, of course, is an unexplained increase in her resting heart rate.  I just pulled out the three pages of information on Cipro.  One of the bullet points under “Other serious side effects of Cipro include” is “Serious heart rhythm changes”.   The next sentence is, “Tell your healthcare provider right away if you have a change in your heart beat (a fast or irregular heartbeat), or if you faint.”  Okay, Nurse Emily was here when the heartrate was almost double her normal.  It did not seem to strike her as significant.  As is so with anyone who has been a Caregiver for a while, I never give away responsibilty for Mary Ann’s medical care.  I will check with Mary Ann periodically tomorrow.  If there is any discomfort I will check her pulse.  If it is racing, I will call Hospice to check with their doctor about how to proceed.  Since Mary Ann’s and our intention is that she not be resuscitated (those words are hard to see appear on this page as I write), we have to be thoughtful in how we proceed.  (Mary Ann has not yet had a chance to sign the DNR form in front of a non-family witness yet — not sure whether procrastination or denial on my part.)

She has been fine the rest of the day and is now in bed, hopefully, for the night.  She went to Bible study this morning and, according to her report, stayed awake.  She had lamented when she first got up this morning that she sleeps so much during the group time, that it seemed fruitless to attend.  She then admitted that getting out with people was good, and that was the only regular time with others she had.

I had an especially good time during the Bible Study,  I had a chance to talk for a time with a cluster of the staff with whom I worked at the church from which I retired.  I realize just how much I miss having those folks to talk with.  When there was some experience or encounter, one of little consequence in the grand scheme of things, it was nice to have some place to report whatever it was.

I headed over to the coffee shop (of course, PT’s) and ran into one of the owners I have known for many years.  As usual, he had just returned from another part of the world where coffee is grown, this time somewhere on the continent of Africa.  He is always entertaining.  I followed that with a visit to the Wild Bird House.  There I could review the experience with the Mallards yesterday and hear some stories about rahabbing ducks.  I didn’t realize that bullfrogs ate ducklings — not a pleasant thought, but interesting to know. Melody rehabs the birds, and Todd is a sort of Renaissance man, who plays in a group and teaches guitar, creates websites from scratch, and builds decks, as well as running the store with Melody. He and I talked deck issues — my bowing crosspiece.

We headed for the store, loaded the car with gas and the back seat with half gallons of ice cream, as well as Mary Ann’s Sesame Chicken dinner.  That is the lunch following which the problems began.  She had the same for supper without any discomfort, at least yet.

This afternoon, while Mary Ann was having problems and then napped, I took on the task of taking up the Snap-Lock mesh flooring in the bathroom to spread out on the driveway, spray with a fungicide, clean with a broom and bathroom cleaner wih bleach in it.  It is  a dreaded job.  The ceramic tile in the bathroom beneath the mesh gets the same treatment.  Tomorrow, Kristie will come and do her monthly cleaning.  This time she will also clean the ceramic tile now that it is uncovered. (The mesh is on the floor to avoid Mary Ann being hurt badly when she falls.)

This evening, Volunteer Jolene came to stay with Mary Ann.  I used the time to do a few things here at the house and then headed to Dairy Queen to take advantage of this week’s special — buy any size Blizzard at full price and get the same or smaller sized second Blizzard for 25 cents.  They are celebrating the 25th birthday of the Blizzard.  We are happy to help them celebrate.  After eating the Blizzards, I headed out again to check on getting a roll shade for the east end of the deck.

It was a full day for both of us. The central concern is Mary Ann’s heart rate.  Since she had a number of silent heart attacks that we missed seven or eight years ago, I do not take this lightly.  Those heart attacks were masked by what we thought was esophagus pain.  It certainly never gets dull around here.

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.

 

April 19, 2010

Wasted and Worn Out.

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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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.

 

April 16, 2010

Male Caregivers

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

The New Face of Caregiving: Male Caregivers

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

April 12, 2010

What Does She Remember?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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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.

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.

 

April 2, 2010

Finally Got to Church

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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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!

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.

 

March 31, 2010

Will They Return?

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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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.

 

March 30, 2010

Breathtakingly Beautiful

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , |
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I can’t describe how dramatic it was when Contractor Jerry stripped off the cloudy protective covering on each side of the twelve feet of floor to ceiling glass today.  The intensity of the colors from outside, the newly greened grass, had to be seen to begin to understand the impact.  Jerry mentioned how much the art professors at the University of Kansas appreciate that the glass Four Season’s uses allows the true colors to pass through with no alteration from the gas between the sealed panes.

I am thrilled with the view.  I could not have hoped for more.  The new cork floor is almost complete.  It will be a while before we get the matter of painting the walls settled and done.  Then the ceiling fan and outside light fixture will be installed.

Tonight, the moon was full and bright.  It almost seemed like daytime.  The moon cast distinct shadows.  I sat on the deck in the moonlight, stars visible in spite of the brightness of the moon.  The monitor was in view, so I could relax, assured that I could see Mary Ann move if she woke up.

It is moments like that, bathed in moonlight, listening to the waterfall, that any frustration is simply trumped by the beauty.  It didn’t hurt that the temperature shot up twelve degrees from yesterday to about 70 degrees and the sun was shining with no interference during the day.

There also were a very revealing couple of interactions between Mary Ann and me today about the project.  She asked, “Where is Mary Ann?”  I thought the hallucnations were firing up. Then, since the subject of the project had been in the air earlier, I asked if she meant, where is her imprint on the project.

She had played the primary role in the colors we will paint the interior of the house, but the project itself has been my doing.  I have talked about other dimensions of it, included her in looking at vertical blinds and flooring, but I have been the one making most of the decisions.

It was sad that she felt left out.  I made that observation to her later in the day as I was getting her changed for bed.  She said that she was just jealous that I was able to do all of that.  What began as a an uncomfortable exchange earlier, ended up drawing us into a tender moment.  She gently touched my shoulder.  I asked her if she still loves me, and she responded that she loves me very much.  There are so few times when the words come, that it meant very much to me to hear those words so clearly spoken.

Mary Ann did pretty well today.  She did not have problems when Bath Aide Zandra was with her, even though I had forgotten to hold off on meds until after she was finished with Mary Ann.

The unpleasant task that has continued for two days as those smooth muscles that run the peristaltic movement in the alimentary canal simply have not been able to complete the journey without help is now in its third day.  Reading the last few posts will help clarify what that means in graphic terms. The smooth muscles are controlled by the Autonomic Nervous System, which has been compromised by the Lewy Bodies.

Breakfast went all right.  We ate lunch at Perkin’s.  Mary Ann was able to handle about half of the meal by herself.  I helped feed her the last half of the meal.  Supper was a sandwich that she managed to eat by herself. She did not nap today.  Volunteer Tamara spent the evening with Mary Ann.  They both seem to enjoy the time together.  I ran errands having to do with the project.  Sometimes that is the beginning of a move into hallucinations.  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.

 

March 29, 2010

The Power of Touch

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , |
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Don’t worry, this post is barely rated PG.  A prior post was rated PG-45.  That was to make clear to our children that it might contain too much information about their parents love life.  Since I am a Pastor, we, of course, had our children by virgin birth.

Before talking about how touch has impacted Mary Ann and me in recent history, today was in some ways a continuation of yesterday.  Her blood pressure was 180/100 first thing this morning.  There is no way I would consider giving her medicine to raise her blood pressure given that reading.  Even with BP that high, there was a little fainting in the morning.

Volunteer Edie spent the morning with Mary Ann.  There were no problems with fainting.  After lunch the challenging intestinal activity resumed for a while, except for the fainting.  That task is more manageable when there is no fainting.  I am longing for the resumption of more normal regularity, demanding less assistance.

One of the unexpected benefits of Mary Ann’s illness is that it demands more touching.  I grew up in a non-touching family.   I was well into my thirties before I greeted Mom with a hug when visiting.  Before that it was hi to Mom and a handshake for Dad.  Gratefully, through a variety of circumstances that changed, especially with our children.

When a marriage has caregiving added to the relationship of husband and wife, there is an intimacy that grows of necessity.  I am holding Mary Ann many times a day.  My arms are around her to move her, lift her, shift her, dress her.  Prior to the addition of the caregiving, we were not very demonstrative and openly affectionate.  Now, I often linger with a hug when doing one of the tasks that requires putting my arms around her.

I have little doubt that there is an intimacy in our relationship now that we might never have experienced without the needs brought by the Parkinson’s and the complications that have come along with it.  Of course, neither of us would have chosen this way to add intimacy to our relationship.  It is sort of like finding a pearl in a pile of poop. (Am I not poetic!)

Last night and this morning were helpful times for me Spiritually.  With the complexities of Mary Ann’s personal needs, her napping, the vagaries of the blood pressure and dementia, we have not gotten to church very often.  Private devotional time does not substitute for corporate worship which provides community and an encounter with the core message coming from every direction.  Time alone with tools that help focus one’s heart and mind on the presence of God is an important mechanism for Spiritual growth.

Last night, the computer provided access to music that became a means through which the message of God’s unconditional love washed over me.  There was some Taizé music.  The there was a group named Anuna (sang in Riverdance).  Much of their music is ancient church liturgical music.  I played again the CD that includes “The Deer’s Cry,” which is an arrangement of the St. Patrick’s Breastplate prayer with which he began each day.  During the time I was listenting to the CD, I turned the lights in the house off, except for a votive candle on the mantle in front of a small iron Celtic Cross, casting a shadow on the wall.  Those are helpful times that allow my spirit to settle.  It was a help after the difficult day yesterday.

This morning at the lake, I listened to more of Anuna and some more Taizé music.  There was a passage from Jeremiah (29:11-14) and a couple of Psalms (100 and 101) that provided some grounding for the morning’s music and nature watching.  There were only a few birds, but the sounds of frogs and little critters of one sort or another filled the air as I walked along a marsh area (reminiscent of my childhood days playing at the swamp).

This afternoon, I had a little time during one of Mary Ann’s naps to sit out on the deck for the first time since the remodeling began a few weeks ago.  The signs of spring are slowly coming into view.  We do not have a secluded cabin in the woods, but as the leaves come out and the greenery flourishes, the little space at the back of our home will provide some of the nurturing environment I need to stay whole in a very fragmented and disjointed world in which I have very little say about what goes on.

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.

 

March 25, 2010

Volunteer Day

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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On Wednesdays, Volunteer Coordinator Mary, tries to schedule folks who are available during the day to spend time with Mary Ann.  Usually one or two of the slots are filled.  Today three of the four slots were filled.

Mary Ann got up early today, 7am.  By 7:30am, Volunteer Eva arrived to spend a couple of hours with Mary Ann.  That freed me to spend an uninterrupted time downstairs with the Spiritual Formation group, just Paul and me today.

Bath Aide Zandra arrived around 9am.  Again today, we chose not to take the morning meds until after Zandra was done with Mary Ann’s shower, hair and getting her dressed.  There had been some fainting earlier, when I was helping her with some bathroom duties, but Zandra had no such problems.

Next came Kristie who cleans the house each month.  I keep the kitchen counters clean and maintain the place in between, but she does the most hated task of dusting.  There is a thorough vacuuming, bathrooms cleaned (although I disinfect the stool each morning when I clean out the commode). The house always feels and smells sparklingly clean when she is done.  Today, the living area was off limits for cleaning since there was active sanding of sheet rock mud going on.  I will gladly do some vacuuming when that job is done, and I will not so gladly do some dusting and return the things I removed for that part of the project.

While Kristie was finishing the cleaning, Volunteer Rebecca arrived.  She spent time with Mary Ann while I enjoyed a meal with friend and former parishioner.  John has been a great support over the years, serving as what we called a Care Partner during the last half of my time at my former congregation.  He is someone with whom I can talk openly about our home situation and the challenges that come.  He was tuned in to the recent transition to Hospice Care.

I returned home for the transition between Rebecca and Volunteer Clarene.  Clarene spent the rest of the afternoon with Mary Ann while I took some much needed time at Home Depot and Lowe’s dealing with a couple of items needed for the construction project.

As promised, I returned with ice cream from Baskin & Robbins.  Mary Ann seemed to have been alert and awake all day long.  After a little time watching the news, Mary Ann needed to go to the bathroom.  When we were done, she said she wanted to stop by the bed on the way out.  I wondered out loud what she was planning to do at the bed.  Still having some residual feistiness that had re-emerged during the visit of the Three from the North, she responded, “None of your business.”  I could hardly stop laughing at her wonderfully “smart-ass” response.

She is still in recuperation mode and decided to get changed into her pj’s and get into bed.  It was only a little after 6pm.  She has been dozing and watching NCIS since then.  She will take her night time meds at the usual 8:30pm and, hopefully, be down for the night.  Actually, there will very likely be two or three snacks at various times during the night, since the ice cream spoiled her appetite for supper.  You would think by now I would remember not to offer ice cream late in the afternoon.

It seemed to be a good day for Mary Ann, getting to spend time with so many whom she counts as friends.  I was able to have time to do some things for myself.  Tomorrow is a day we have to ourselves, no appointments or visitors expected.  I need to start thinking about what we can do that will provide something to grab Mary Ann’s attention and add interest to her day.

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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