April 21, 2010

Tired, Frustrated and Very Grateful

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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 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 17, 2010

Good Days Come to an End.

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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The short string of good days ended, beginning last night.  The remote control sitting two feet from her was a candy bar.  That and some other comments hinted at what was coming.  Last night she was up at least once an hour throughout the night.  She got up early this morning.

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

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

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

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

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

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

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

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

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

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

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

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

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?

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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

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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 27, 2010

Reduplicative Paramnesia

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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Last night Mary Ann told me that they were trying to trick her.  They were trying to convince her that she was not in her bedroom.  That is a Delusional Misidentification Syndrome called Reduplicative Paramnesia.  It is the belief that a familiar object is actually a substitute for the real one.

Those whom Mary Ann calls the Thursday people were back.  I think it was they who were trying to convince her it was not her bedroom even though it looked just like it.  At least one other time during the night, she asked if the people had settled down yet. As I have mentioned before, I do not want to reinforce the delusions and hallucinations, but I don’t want to dismiss them since they are real to her.  I try to explain that they are not real in a way that I can see them or do anything about them.  Gratefully, she is not terrified by them.  Hospice Nurse Emily confirmed that today when she asked Mary Ann about the hallucinations.

The problems related to what information her visual cortex sends to her awareness are one of the signature symptoms of Lewy Body Dementia and the Dementia that comes to some Parkinson’s Patients.  It is the problem with delusions and hallucinations that often force the issue of using residential care.  As challenging as they can be, with the help of Hospice, I am determined to avoid any residential care other than perhaps a respite day some time. So far the hallucinations are not so strong and so constant as to be impossible to handle.

Today, again, there were multiple events of syncope (fainting) associated with trips to the bathroom.  I suspect that I held her up on the stool upwards of a half hour adding together ten or fifteen minute segments.  When Hospice Nurse Emily took Mary Ann’s blood pressure this afternoon it was 118/68.  That would be good for a twenty year old.  When it starts out that low, it can, of course, go much lower when she stands up.  I have been trying to manage the fainting without resorting to the Midodrine that raises it.  The high BP is so harmful to her heart and kidneys especially.  If it remains that low, I may need to reconsider restarting the Midodrine.  The Cardiologist has given me the freedom to decide whether to give her the Midodrine based on our quality of life.  The preference is to avoid using it.  Those sorts of decisions place a lot of responsibility on my shoulders.  Yes, I am the one with the best vantage point for making the decision, but I feel the weight of that responsibility.

Gratefully the fainting spells were over just before Hospice Aide Sonya arrived at 11am to wash her hair, give her a shower and get her dressed.  Sonya said that Mary Ann did fine. After the shower, we headed out to do errands and to pick up lunch for Mary Ann.  It was a favorite of hers, steak soup and lemon meringue pie from the Copper Oven.

Again after Nurse Emily left in the mid-afternoon, we headed out for errands.  During that run, I picked up some flowers for Mary Ann.  Daughter-in-Law Becky had won a commitment from me to get Mary Ann flowers regularly in trade for adding our cell phone to their account. Do you see why we think so much of our children and the ones with whom they have chosen to spend their lives?

Of course that trip had to include a stop at Baskin & Robbin’s.  Those of you who have been paying attention will probably want to remind me that late afternoon ice cream treats ruin supper and make for tough nights including lots of snacks.  I know!  But the ice cream tastes so good.  She went to bed not too long after 6pm, and yes she has already gotten up to eat a sandwich and some applesauce.  That was around 9pm.  I hope that is enough to get her through the night.

Even with all the ice cream, I reported to Nurse Emily that Mary Ann weighed in at 113 pounds yesterday.  That is down from the last time, 114.5, but up from the time before that, 112.5.  That is about 10% less than she weighed not too many months ago.  At least she seems to be holding her own at the moment.

There is one way in which her weight is an advantage.  Most of those who post in the online Caregiver Spouses of those with Lewy Body Dementia are women caring for their husbands.  A number of them in the last couple of days have talked about the predicament of having their almost 200 pound husbands fall, leaving them unable to get their husbands back up.  Most of them have had to call 911 to get their husbands back up.

I am grateful that Mary Ann is light enough for me to handle most of the time.  Reading those posts, I appreciate how easy I have it by comparison.  I feel a little wimpy when I have trouble getting her off the floor.  It all has to do with where she is located when it happens, whether I can get her in a position that allows me to pull her up and whether or not she is alert enough to help in the process.  When she is partially asleep or feeling very weak, picking her up from the floor with no assistance from her is almost impossible for me to do without risking damage to myself, thereby rendering our system unworkable.  We do have a Hoyer Lift to use if she is located in a position that allows me to get the sling under her.

It is getting late, and since i have had to get up fairly early each day to prepare for the workers on the remodel project, I am anxious to sleep in a little while tomorrow morning.  That will be up to Mary Ann.

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 26, 2010

Crash Day

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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The only question was how long the improvements would last.  It was a somewhat restless night with confusion at various times during the night as to whether or not it was time to get up.  Mary Ann got up early this morning and the hallucinations were back.  They have continued.  The sheet that was over some items in the living room to protect from the dust of sanding sheet rock joints became someone sleeping on the raised hearth of our fireplace.

Since we had a day free of any appointments or plans of any sort, I suggested we go for a Bear Claw and coffee at Panera’s.  We started out pretty well.  After a while, Mary Ann began shutting down, and needed help getting pieces of the Bear Claw to her mouth.  Then as soon as that was done, she crashed.  She could no longer keep her head up.  She lay it down on the table at Panera’s.

I got her into the car and back home.  She wanted to go to the bathroom.  It was no small task to get her out of the car up the two steps and into her transfer chair.  Then I had to hold her up with very little help from her as I transferred her from the transfer chair to the toilet stool.  Holding her up while getting clothes down is especially difficult when she can’t help.  She had crashed enough that her eyes were mostly closed, and she had trouble figuring out where to put her feet and what to do next — even with words describing to her what to do.

We had some minor waste management issues but got the job done.  It was at least as difficult to get her transfered back into the transfer chair.  Getting her clothes back on took more physical effort than usual.  Admittedly, I was glad to get her into bed for a nap.  I am hoping that she will sleep off some of the confusion.

At times like this, I feel pretty vulnerable physically.  I am stressing and straining and twisting and turning in ways that certainly put my long term and short term functionality at risk.  The other night, Mary Ann was just not putting things together mentally when I was trying to get her on to the commode.  When we get to a certain point in transferring, she needs to sit down fairly quickly to make sure the flow ends up where it should.  I had to physically bend her body into the sitting position, and get her seated on the commode. She just could not connect with what to do.  That was one of the times I worry about what I may be doing to myself that has potential of interfering with our system’s ability to continue to work.

Mary Ann slept for about four hours, got up and ate.  She continued to seem confused and unsure of what she wanted to do.  We have been to the bathroom many times with as few as fifteen minutes in between.  Most often there has been no action once there.

She lay back down at abour 4:45pm.  She got up again at about 6:30pm for supper and some television.  She headed back to bed a little after 8pm.  I am hoping she will sleep better tonight.  We did not get ice cream this afternoon, so she did eat a half sandwich for supper.  That probably will not be enough to make it through the night.  As always, I hope for a restful night, but will, of necessity, accept whatever comes.

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 23, 2010

Cure Discovered

Posted by PeterT under Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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The cure for what ails Mary Ann has been discovered.  Their names are Joy, Terry, and Cherri.  She has laughed and talked and asked questions and given answers. The feisty lady I married has returned.

At one point today we were all laughing so hard, that I, for one, had to wipe watering eyes. Mary Ann was laughing just as hard.  It is a wonder that we weren’t thrown out of Baskin & Robbins for rowdy behavior.

Another time one of the three said to Mary Ann she could hardly believe that she had been married to a Minister for 44years, to which Mary Ann said “Me, too.”  Mary Ann asked one of the three how someone in her circle was doing.  It was a completely appropriate question coming from a full awareness of their history together.  I could  hardly believe my ears.

When Mary Ann and I have been alone together today, or occasionally when she talked quietly with me, she was having mild hallucinations about one thing or another.  She wanted me to clean up the pile of poop on the carpet.  She was looking at the transformer on Cherri’s little Notebuook computer.  When engaged with her three friends, she was completely lucid and able to track what was going on.

Mary Ann slept like a log last night.  The Girls wore her out.  It was a good tired.  It allowed her to sleep well.  This morning she was up for an hour or so before Bath Aide Zandra came, but we held off on taking her morning meds.  As hoped, Zandra had no problems with her, there was no fainting.  She took her meds after the shower/hair washing/dressing time.

Mary Ann did have a mild fainting spell when we were all gathered in the kitchen, having some breakfast, but the girls had seen that before a time or two when we visited them up north a couple of years ago.

After talking for a while, we headed out for a lunch at a great sandwich place called the Classic Bean.  We had a good time there.  After that Mary Ann had an appointment with her Primary Care Physician.  Blood tests had good numbers, there was no need for any change.  Since we see the Cardiologist and Neurologist regularly, he did not mess with those meds.

Next came the trip to Baskin & Robbins, described above.  She wolfed down two scoops of Gold Medal Ribbon as fast as I could get the spoonfuls to her mouth.  We did a mini-tour of a couple of spots with great views and returned to our house for more talk.  In the morning and again in the afternoon, I retreated to my office to give them time to talk without a guy present.  Some things are just better not to know!

I had gotten a frozen Lasagna, a loaf of Asiago Cheese Faccaccia bread and a large container of salad greens when at the store yesterday.  For supper we had a buffet style relaxed meal with a bottle of good red wine.

The three are planning to leave in the morning to head back to Northern Illinois.  I think they were thrilled with how well Mary Ann did while they were here.  A couple of them have been reading these posts, so they were expecting a much more subdued Mary Ann, far less able to be involved and responsive in their conversations with her  The Mary Ann they have known for all these years emerged to spend time with them.

While none of us can stop the disease process in its tracks, the Parkinson’s Disease Dementia took a beating these last twenty-four hours.  For a while it lost its grip and Mary Ann returned.  I will be bold in lobbying for more visits as the months go by, assuming Mary Ann stabilizes.

When the mail came today, there was a wonderfully goofy surprise.  My Sister Gayle saw something she just had to get and send to Mary Ann.  It is a stuffed Donald Duck about 16″ tall.  When a button is pushed, he sings “Polly Wolly Doodle” and walks around.  If he is picked up by the ears, he screams, “Put me down!”  Needless to say there was more laughter when Donald performed.  Gayle knows Mary Ann well.  There were a number of individually wrapped Fannie Mae chocolate candies included in the package.

Mary Ann is in bed now and seems to be settled.  She has to be very tired with such a full day of activity.  As always, I will not presume to predict how the night will go.  I will just hope she sleeps well.

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

 

March 21, 2010

Confusion Keeps Me Close

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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She wondered if Daughter Lisa was looking for an apartment for her and the girls.  I realized quickly that there had been a dream/hallucination/delusion at some point about our Daughter and Son-in-Law.  Mary Ann was convinced that Denis had asked for a divorce.  When I explained that they were solid as a rock, happily married and there was no divorce talk there, she said she had wasted a lot of time with her stomach in a knot.

Then came a part of the dream that she even thought was pretty silly.  There were Mormons who were trying to take over Denis’s Dad’s farm.  I guess they were some of his brothers, who were trying to talk him into becoming Mormon.  I have to say I am at a complete loss to figure out from where the scenarios for some of the dreams/delusions/hallucinations come.  Many seem to simply be misfiring neurons that use bits and pieces of material residing in distant corners of the memory banks.

When she insisted on getting up early, I knew today would be a difficult one.  I thought there might be some napping, freeing me to do other things.  She was up most of the day, confused for the majority of the time. When she is alert and just on the other side of lucid, it is more difficult for me to manage than many of the other challenging times.  Like many who are retired some days it takes me a while to figure out what day of the week it is.  I did not try to count how many times she mentioned the day and got it wrong or asked what day it was. More than once, she thought it was Easter.

There were things (invisible to me) one place or another in the house, things that needed explanation or needed to be picked up or dealt with in some way.  She stood up dozens of times to do something, often not knowing what.  I could not leave her side for more than minutes. It helped a little that there was an NCIS marathon on television.

She did eat pretty well. Very early this morning she started snacking since she had eaten very little at supper last night.  There was tapioca at 3:30am, applesauce at 5:30am and chips at 6:30am or 7am.  She ate her normal breakfast and lunch (with ice cream), and ate lots of the sausage, potatoes and onions I cooked for supper. It was her idea to get the ring of sausage the last time we went to the store.

While I did feel sort of tethered to Mary Ann’s side today (she doesn’t much like my hanging around and jumping up with her, always asking where she is going) there was a treat that helped keep me interested and engaged in the day.

We woke up to between five and six inches of snow.  Since the construction began, the birds have not been around.  The feeders had to be taken down so that they could work on the deck. The snow brought the birds back, by the dozen.

The waterfall was a draw.  There were birds of one sort or another in it most of the day.  There were still three feeders hanging from a stand in the back yard next to the waterfall.  There were some places that because of the overflow of water had hundreds of sprouting sunflower seeds.  A few birds managed to find there way through the snow to a spot in the back yard.

At the front of the house where some small feeders are located by and on the window, birds were busy.  The street in front of the house was filled with Robins drinking the melting snow.

We have a very good quality speaker in the house with a microphone outside, the wire coming through at the corner of a casement window.  When that microphone is on, the sounds of the birds are full volume inside the house.  The speaker is made for that purpose.  It was a present from our kids.

With probably a hundred or hundred and fifty birds spread among the trees in the back yard and the neighbors yards, the bird songs were constant all day long.  The birds came in shifts to the options, bird feeders and waterfall.  There were a lot of Starlings, certainly not a favorite.  There were Grackles and Robins and Mourning Doves, an occasional Bluejay, Brown Headed Cowbird.  In front there were sparrows, finches, a Cardinal and more Robins.

There was one bird represented in the back yard that brings back wonderful childhood memories.  Lots of folks are not fans of this bird because it can sometimes be found in huge flocks that can be a little overwhelming.  It is the Redwinged Blackbird.  Often, the color visible on the wing is actually yellow.  Redwinged Blackbirds are often found in swamps, sitting on or among cattails.

I spent some of my happiest times as a child, playing at the swamp a short block from the house.  I can still picture that crystal clear water with the cattails all around, filled with huge water bugs that had what looked like two large oars, one on each side of their bodies, tadpoles, and dragon flies everywhere.  Mom sometimes came down with the willow switch to bring me back home, fearing that I would fall in or hurt myself in some other way.  That did not deter me from my adventures there.  Once I made the mistake of describing the muskrat I saw down there.  Mom and Dad decided it was probably just a regular rat.

The cattails at the swamp were filled with singing Redwinged Blackbirds.  The moment I hear that sound, I am back at the swamp, feeling the wonder and joy and peace that I found there.  I only sctually saw and identified one Redwinged Blackbird in the yard today.  I heard more.  They were there all day long, singing often enough and loudly enough that I could hear them through the constant squeeking of the Starlings.

Late in the day, Mary Ann settled for a while, napped with her face on the little table in front of her.  She would not let me help her move.  During that time I was able to get the driveway and sidewalk shoveled.  Still later, I got the deck shoveled off and spread large quantities of oil type Sunflower seeds on the deck and next to the waterfall in hopes that there will be more visitors tomorrow, coming to eat.

Mary Ann’s three childhood friends arrive from Northern Illinois tomorrow evening.  Tonight as I was helping her into bed and giving her the night time pills, she heard them arriving.  I reminded her that it was tomorrow night that they were coming.  I hope she rests well tonight.

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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