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 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 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.

 

March 19, 2010

Good Friends — Great Day!

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By the time they arrived she was a little more subdued.  When she got up this morning, she was her feisty self, the one I have known for almost 48 years, smart-ass comments and all (excuse my French as we used to say — no offense intended to those of French ancestry).  There was laughter wound into the interactions.  It was a good morning.

In the course of our interactions, she asked me to tell her about what went on last weekend.  I asked for more help in determining what she was referring to, since I couldn’t remember what went on last weekend.  I thought maybe she was referring to the trip to Oklahoma a couple of weeks ago.  She said that maybe it was just a fantasy, but she recalled events including (again) my wedding to Lulu, this time including some sort of Evangelist and someone stopping the wedding just in time.

I reiterated that I refuse to marry someone named Lulu and she is not going to get rid of me by palming me off on some other woman.  She is stuck with me to the bitter end, mine or hers.  This time she did not seem upset about what she was remembering.  She seemed to understand that it was not real. The conversation was clear and rational, if the content was not.

After such a good hour or two, she needed to use the bathroom.  She fainted three times during our stay there.  Each time we got up for me to do my part in the task, she fainted again.  They were not just momentary lapses but substantial ones.  After that series of episodes, she was very tired and her eyes slammed shut.  If no company was coming, she would probably have gone to bed for a couple of hours or more.

Since company was coming, I did not offer and she did not ask to lie down.  When the crew from Kansas City arrived, she was able to rally to a level of alertness that allowed good interaction for a number of hours as we talked, ate out, drove around a bit and returned home.

When we ate out, she fed herself the sandwich.  Yesterday, she had fed herself some of the time.  When the huge cup of ice cream came after lunch, she insisted on trying to eat it herself.  She often turns the spoon upside down when eating.  It is hard to watch without trying to turn it right side up, but when she is in her determined mood, she refuses to change that pattern.  Finally, after I asked her quietly if she would let me help, she agreed.  At that point she had been working a long time without getting much ice cream into her mouth.  As has happened before, the love of ice cream trumped the pride standing in the say of getting it into her mouth.  It does seem to me that she is regaining a little of her ability to feed herself.

What we did was quite secondary to doing it with folks with whom we have a long history, folks with whom we can be ourselves.  They are folks who have come to be almost extended family.  They are all University of Missouri grads and have little use for the Kansas teams.  None of us is perfect.

In the crew of eight of us there have been struggles of all sorts.  We each have stories to tell.  One in the group has had a chronic form of ALS that was diagnosed maybe eight or so years ago (not sure of the exact timing), long after symptoms of something had been apparent. She, her husband were not able to come since she broke her knee cap and is finishing up a long rehab.  The wife of one who came could not travel yet after a painful test for a problem yet to be diagnosed.

Mary Ann slept on the couch for a couple of hours after they left.  She just did not want to go in the bedroom to nap.  I am inferring from her reluctance to nap in the bedroom lately that she feels if she is in the living room or kitchen, the napping will not be as long.  She will not lose as much of the day.  She will still be in the heart of activity, even if dozing.

The project is continuing to progress.  The sheet rock is up and the first coat of mud is almost complete. It will need to cure until Monday, when Mary Ann’s friends from Junior High years on will be visiting from Northern Illinois.  That is, of course, when the sanding will begin.  The girls and Mary Ann may need to spend time in the lobby sitting area of the hotel to avoid flying plaster dust.  It will be nice to have an alternative place to spend time. After having the view through the sun room glass (even though still covered with cloudy plastic sheets) for a day and a half now, I cannot even imagine the house without it.

After getting up from her nap, Mary Ann was not hungry and would not eat any supper. After I started eating some leftovers, she did eat a few chips and a cookie.  I have little doubt there will be a need for food some time during the night.

While there is no clear reason for Mary Ann to have been doing so much better the last few days, we will take it and simply celebrate.  We have certainly had more than our share of bad days and there will be more to come.  As always, they will come one at a time.  We will deal with each when it arrives.

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 18, 2010

Let There Be Light!

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“…and there was light.”  This afternoon twelve feet of light flooded into our little townhome.  It seems as if not only have we added a six foot by nine foot area to our living space, but a deck, waterfall, and back yard filled with trees.  By contrast to the closed in feel of the interior living space in our little townhome, it now feels expansive and open. 

Sometimes it surprises me just how powerful the living, growing outdoors filled with birds and little beasts and thriving greenery can be for me.  I do not share the theology of Avatar, but I share the awe and wonder and respect for the healing influence of the creation. 

On this project, we are using the Design/Build approach.  I think that means something like flying by the seat of our pants as each question/option/decision comes up.  Gratefully, the contractor and carpenters have had very many years of experience doing this sort of project. 

“Would you like the ceiliing raised?  How about a ceiling fan?  If so, what size, color, style of lights?  Is the wall paper staying or going?  How many and where should the outlets go?  Do you want a railing on the short section by the stairs on the south side, a railing on the east side, a railing on the west side, anything on the north side?  How high should the posts be on the east side and what sort of blind will you get for it?  How wide should the steps be?  How wide and thick should the interior support post be?  Where should the switches for the ceiling fan, its light, and the outdoor spots go?  What should be used to transition from cork floor to carpet?  Do you want the sliding glass door to open in the middle or on the side, what side?  What about blinds for all that glass? Verticle? What style? Color? Fabric? Vinyl?

So far it looks even better than I had hoped.  Mary Ann has been skeptical about the project, but when the walls came down today, she seemed to like it very much. 

The noise has been deafening.  We had hung out in the kitchen at the little ice cream table most of the time.  When Mary Ann has been napping in the bedroom, she has seemed completely oblivious to the machine-gun rattle of the drills and pneumatic tools.  At some level, the sounds of construction are music to my ears as the project takes shape.

The last two days have gone pretty well for Mary Ann.  She attended he Tuesday morning group and was fairly alert there.  We ate out at Perkins so that she could have pancakes.  She let me feed them to her.  She consumed about 80% of three buttermilk pancakes and all of two pieces of bacon.  She had eaten a good breakfast and had a couple of cookies at her Bible study.   She ate a small but adequate supper, with a couple of scoops of ice cream to finish it off. 

The Hospice Nurse came by for a while to check in and ask her routine questions about how MA is doing.  She is, of course, interested especially in any changes.  Mary Ann’s blood pressure was high again, 208/100.  It is reassuring just to have someone who listens and writes down what is going on.  It takes a little of the pressure off that sense that I have to be on top of everything and catch problems on my own.  It has seemed a little overwhelming sometimes to feel as if I need to be able to figure out what is going on with Mary Ann and when what is going on warrants an intervention of some sort. 

Stacey came by to show us some more options for verticle blinds to provide privacy with all that glass opening into our living space.  She also brought some more paint samples since Mary Ann had mentioned some ideas for colors to use in repainting the main upstairs interior walls.  I was pretty excited that we came up with what we want to use, and Mary Ann had significant input. 

Last evening Volunteer Patrice spent time with Mary Ann, while I served as an interview Guinea Pig for a Doctoral Student, Gretchen, Daughter of Don and Edie, whom I have mentioned in earlier posts.  That interview was done at PT’s, so I got some time away from the house, and Mary Ann got a break from me.  It is always good to have something different and disengage from the role at home for a while. 

Last night she slept well.  I was grateful, since the time change conbined with late nights writing posts caught up with me, and I headed to bed without writing last night. 

Today has gone very well.  Mary Ann sat in view of the monitor this morning without getting up, so that I could remain with the Spiritual Formation Group downstairs most of the time.

Bath Aide Zandra has struggled with fainting issues interfering with a safe shower experience.  Last Monday, Mary Ann had not yet taken her meds by the time Zandra arrived.  She had no problems with her and enjoyed that she was able to converse with Mary Ann.  For the last couple of weeks, Mary Ann has been very tired and unresponsive as well as fainting often while showering and dressing. 

This morning, I purposely waited and did not give her the morning meds before Zandra came.  Again, she did very well.  Mary Ann did not faint and was conversant with Zandra.  I have been convinced that most often the fainting has come when the morning meds started kicking in.  Many of the meds have the side effect of lowering blood pressure.  This week’s experience seems to confirm that the meds are a triggering element.  I am going to try to remember to hold off on meds until after her shower on those days.  She still has Orthostatic Hypotension, but maybe we can at least minimize the risk of it acting up during her shower. 

Friend and Volunteer Coordinator Mary came by this afternoon to spend time with Mary Ann while I ran some errands related to the remodel project.  She broght some flowers, always very much appreciated by both Mary Ann and me.  Flowers brighten our sometimes stale environment. 

Mary Ann ate a fairly light supper, and then a bit ago she got up from bed to eat a half sandwich.  I hope a full stomach will help her sleep well.  There are, of coruse no guarantees about that.  We have some company from Kansas City tomorrow, a visit we are both very much looking forward to.  We have been friends with the crew that is coming for more than 35 years.

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 9, 2010

Cherish?? Maybe not Every Moment

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , |
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“I am cherishing every moment we have together.”  That is what I said in last night’s post after the challenge of feeding Mary Ann.  I lied!  As terrible as it sounds, I don’t cherish every moment.  At 4:15am after having been aroused for one thing or another multiple times an hour (the last one only five minutes before) Mary Ann insisted on getting up.  I did not cherish that moment with her.  I got her up and out in front of the television in the living room and went back to bed for an hour.  Then she was ready to lie down, at least for a while.

I guess I am a terrible Husband and Caregiver to admit to not cherishing at all times my sick wife on the last leg of her journey from here.  Yes, I do feel guilty about it.  I sound so sweet and loyal and loving when I say I cherish every moment with her.  I am not all those things!  I am just an ordinary selfish somebody trying to live out my life and my relationship with Mary Ann with a degree of honor, expressing my love for her.  I do cherish most of the time with her, extending even into waste management.  I just get grumpy when I don’t get my beauty sleep.  (Who is going to be the first smart-aleck to suggest just how clear it is that I am seriously sleep-deprived?)

Is it the Amantidine that we resumed that is making the hallucinations and restlessness so intense, or, since she had slept four days, were we just due for the usual return of that behavior?  God only knows, and He ain’t telliin’.  How about the idea of somehow trying to get God a wireless router so that he could just email responses to prayers and cries for help??  How getting on that, Steve, Bill?

When Daughter, Lisa was here last week, her Mom slept all but about four hours of Lisa’s visit.  “Lisa, I would gladly have traded last night for one of the sleep days or nights you had when I was gone.”  Yes I am grateful that Mary Ann is napping now.  I gave her the morning dose of Amantidine, still hoping that she will regain the use of her hands and the ability to assist with her leg muscles when being transferred from her chair to the bed or toilet stool or dining room chair or car, should we be able to get her out again.  This almost 67 year old body is beginning to show its age (the mind is still 25 years old, except for the memory which is pushing 90).

At one point last night Mary Ann was convinced that she was not in her bed, but another bed like hers.  She was convinced this morning that the dining room table was not our our dining room table.  In fact when I first tried to transfer her to the dining room chair for breakfast, she refused since she didn’t want to sit next to the bride.  At least when I checked with her, the bride wasn’t Lulu (the woman I married after divorcing her in one of her dream/hallucinations).  She didn’t know who the bride was.  When I asked if she wanted me to turn on the television she said it was “his” television, not ours.

She has been napping for about three hours now.  Yes, I am grateful for the break.  I just don’t want her to sleep too long.  She had a good breakfast, but she has not yet had lunch.  It is after 2pm.  Our Daughter-in-Law Becky relayed an email from a close friend who works for a Hospice.  In that email, she said that people come to need less nourishment at this time in life, suggesting that I can relax if a meal is missed.  Mary Ann always “ate like a bird” — one reason she has never gotten overweight (very annoying) in all our years together.  Other than ice cream, she usually eats what would be the equivalent of a child’s portion (a pre-teen child).

This morning Bath Aide Zandra brought a helper with her since Mary Ann had fainted so many times the last time she did her shower.  Zandra was concerned that Mary Ann had hit her head because she couldn’t get into the right position soon enough to stop her from falling off the shower chair.  She asked about the possibility of getting a secure three sided shower chair so that Zandra could stand in front and be sure she wouldn’t fall to the side.  We had a tubular metal rolling shower chair that we obtained a few years ago.  It turned out to be unsafe because of the reinforcing bar across the front, making safe entry and exit from the chair virtually impossible.

Zandra was a bit distressed to see how much Mary Ann had declined since her visit last Wednesday.  Today Mary Ann could not assist at all in getting from the transfer chair to the shower chair and back.  Mary Ann’s hands were fine last Wednesday but swollen and clubbed (nor sure that is the right word for describing the claw-like form) today.

I just called our Hospice Nurse, Emily, who listened carefully to what we needed for the shower.  She said she would try to find it for us.  In fact, she said that if we didn’t hear from her, one would be delivered tomorrow afternoon.  Holy Mackerel!! That is an unbelievably fast response.  I have seen PVC pipe chairs that looked sturdier, but the last time I searched a couple of years ago, I didn’t see one without a bar in front.  I hope the supplier Hospice uses has something workable.

Mary Ann had an appointment with the Dental hygienist for her much needed quarterly cleaning scheduled this afternoon.  I did try to get her up in time to go, but she declined.  That was at about 1pm.  It is now 2:45pm and she is still sleeping.  Again, she didn’t want to go to bed until after 11pm last night and spent much of the night, especially from 2am or 3am on, up and down.

She slept until some time after 5pm. She ate a good supper, sat in front of the televsion for a while, then headed back to bed about 7:30pm.  At about 8pm she was hungry and wanted a bowl of ice cream again.  After taking some Ibuporfen for back pain and then later taking her night time meds, she is now lying down.  I am not expecting her to settle in without lots of restlessness tonight.  We will see.

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 2, 2010

Time to Accept a New Normal

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , |
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I think spending the day last Saturday while Mary Ann was sleeping, moving into and through the feelings about where we seem to be headed allowed me to listen better and and come to terms with where Mary Ann is now in the disease process.

In the phone call about the fax I sent last week, Dr. Pahwa’s assistant relayed the option that Mary Ann see a Psychiatrist to look over the medicine regimen to see if there are some better options for her.

When we talked with Dr. Pahwa today, it was apparent that the Psychiatrist option made sense if I was still uncomfortable with the Seroquel.  We would need to use a local Psychiatrist where we live (an hour from KU Med) since one of the main alternative meds demands monthly blood tests to monitor it.  I have read enough to know, and Dr. Pahwa confirmed, for the sort of dementia Mary Ann has, Seroquel is by far the better choice.  The alternative also is likely to make the fainting worse.

Here is the heart of the matter.  There is no one around this area who knows the unique characteristics of Parkinson’s as well as Dr. Pahwa.  I suppose it sounds arrogant to say so, but I would have to explain the uniqueness of Mary Ann’s complex version of Parkinson’s and the character of this dementia to someone who is a generalist and does not focus all their attention on Parkinson’s.

I know of nowhere to get better information on what to do and when in dealing with the complexities of Mary Ann’s expression of Parkinson’s.  Every time in the last 23 years we have gone to anyone other than the Dr. Pahwa and Dr. Koller before him, Mary Ann has done poorly.  She has been where she is now in some ways at least twice before, once 14 years ago and once about 8 years ago.  The first time it was Dr. Koller and the second time it was Dr. Pahwa who brought her back to a high level of functionality each time within weeks of seeing them.

While he was sensitive in how he approached it, and actually simply responded with a look that said more than enough when I said it, Mary Ann is doing as well as we can hope given how long she has been battling the Parkinson’s.  Changing meds in some elusive search for the perfect combination restoring her magically to a former place in the journey would be a very risky exercise in futility.  What might be gained is not worth the risk of what could be lost.  Those are my words, but he agreed immediately.

If we lower the Seroquel, we opt for less sleep time and more hallucinations.  Selfishly, I don’t think I could handle that result.  The two days and nights she sleeps, allows me to sleep.  The times there are streaming hallucinations already push me right to the outer edge of my capacity to cope.

It is time to accept that we are where we need to be.  This is our new normal.

We talked some more about enrolling in Hospice.  We will have a family talk this Saturday when the kids and I are together.  If Mary Ann is awake and alert, we will certainly include her in that conversation.  If she is not, I will talk frankly with her about it.  I have already begun doing so.  I talked openly with Dr. Pahwa, as we were together with Mary Ann in the Examination Room.  I talked about the DNR (Do Not Resuscitate) order that would be expected for the full Hospice program.

I will try to get someone from Hospice to come over to the house before I leave Thursday morning for three days of solitude at the Spiritual Renewal Center in Oklahoma.  I will also try to get any input the Cardiologist might be willing to give that could help inform the decision.

I mentioned in last night’s post that Mary Ann was beginning to hallucinate.  She also fainted two or three times during that first commode trip of the night.  She did not sleep soundly through the night.  There were a number of trips to the commode.  As happens when we transition from sleep days to hallucination days, she was up more than once an hour in the last half of the night.  I finally fed her a single serving container of applesauce and took her out in front of the television with the promise that she would not get up.  Then I got a few minutes more sleep, until the alarm went off, got showered and dressed.  By that time, she had, of course, gotten up and was on the floor outside the bedroom door.  She did get a scrape on her leg, from what I am not sure — there was nothing obvious that she might have hit.

She took her pills and ate breakfast in time for Bath Aide Zandra to get her showered, hair washed and dressed in time to leave for the Neurologist appointment in Kansas City.

She had pretty much shut down and moved into her head on her lap mode as we moved from the bedroom to the door to the garage.  I have never had a more difficult time physically, getting her out of the chair, to the steps, down the steps, to the car, and into the passenger seat.  I almost had to carry her.

We made it into the car.  She had her head down the entire trip to KC.  Getting her out of the car and transferred directly to her wheelchair went much better there — probably because there was no walking, nor were there any steps.  In the past, steps have been her best thing.  That is one of the  unusual characteristics of Parkinson’s.  The line of the step make it easier to get her feet to move than on a flat plane.

In the doctor’s office, she was in leaning forward mode, although not all the way to head in lap position.  She was minimally responsive during most of the time with the doctor.

We agreed to fill out an assessment that will be used in a study on the impact of non-motor symptoms of Parkinson’s — all the problems other than the ability to move arms and legs, and keep balance.  The survey took a very long time.  Mary Ann was really struggling to respond.  I am not sure how helpful we were to the study.  One interesting quirk was that while she managed to say the months of the year backwards, December, November, etc., she could not track with another request.  She was asked to count backwards from 100 by sevens.  I was glad I wasn’t asked to do that.  Kelly, who was administering that part of the survey, explained it and repeated the instructions a number of times.  Mary Ann’s first response was to just count backwards from ten to one.  Kelly repeated that it was counting from one hundred, subtracting seven each time.  She then said what is seven subtracted from one hundred.  Mary Ann answered, three.  She never connected that Kelly said 100, no matter how many times she explained it. Mary Ann always responded with ten.

Admittedly, it was hard to watch as she was asked to write a sentence of any sort, and she made some tiny scribbles and was not able, of course, to read it or say what she wrote.  She was to draw a simple shape matching one on the paper in front of her.  She made a couple of attempts, but to no avail.  Mary Ann was always very good at drawing.  She illustrated a children’s book she wrote many years ago.  She never tried to get it published, but it is very cute.

I know she hates how much she has lost over the years.  It has become just a fact of life now.  It is part of our current normal.

When we got home Mary Ann ate some thick and hearty steak soup with my help, finally falling asleep in her lemon meringue pie. She was refusing to let me help her at that point.  She napped in bed for a couple of hours, got up, ate the pie (this time letting me help), and soon headed back to bed.  Of course, I cannot be sure how tonight will go, but we are on the increasing hallucination time if her current cycle of symptom changes continues.

Today was a day in which the facts of our situation seemed quite clear. Having worked through the strong feelings about the matter last Saturday, and a Sunday morning a month ago, seemed to make it easier to be rational about the information available to us today about where Mary Ann is in this journey with Parkinson’s tagging along.  Dr. Pahwa reminded us how long our battle with Parkinson’s has been going on — twenty-three years now

It is time to accept where we are in the journey.  We don’t have to like it.

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 1, 2010

A Great Day!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , |
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What a ride!  Mary Ann was ready to get up at 7:15am today.  This time I did not ask her to stay in bed until the alarm was due to go off at 7:45am.  She had been sleeping for 36hours straight.  I decided I did not want to risk her falling asleep again for a number of hours.

I got her dressed right away; then washed her hair. She took pills and ate a good breakfast.  She let me feed her.  She did not seem to be hallucinating at all.  She was very lucid.  There was a some fainting, so after checking her blood pressure, I gave her a half tablet of Midodrine to help keep her blood pressure up.

Volunteer Elaine came to stay with Mary Ann this morning while I had my usual Sunday morning quiet time at the lake.  Elaine engaged her in conversation.  At some point while I was gone, she began reading to her, which Elaine was doing when I returned.  Mary Ann was leaning forward some, but Elaine just moved her back up regularly.  As a result, Mary Ann was awake all morning.

Mary Ann picked scrambled eggs and bacon from the options I gave her for lunch.  She ate every speck of it on her own.  By the time she was done with the small amount of Baskin & Robbins ice cream that was left from a few days ago, Volunteer Jan arrived.

This is the first of the monthly Beginning Birders’ field trips I have been able to make.  While I did not get a detailed report from Jan about how things went, Mary Ann was awake when I left and awake when I returned.  As far as I know they had some good quality time.

Jan brought food to heat for supper.  Since Mary Ann had been up all day, we decided to stay home rather than go to the Evening Service.  That way I was able to prepare what Jan had brought.  Again tonight, Mary Ann let me feed her supper.  She ate a full serving and followed it with one of two scoops of Baskin & Robbins ice cream that I had gotten for her two days ago.

You can do the math.  She ate three full meals today.  She also had part of an apple as a snack when Jan was here, and a snack of some coffee cake with Elaine just after I left for the lake.  Her body must be in shock from all the food!

If a person only had today as a reference point for Mary Ann’s health, they might wonder what all the fuss is about.  My gut has been yanked from one extreme to the other in a matter of hours.  I guess that is nothing new.  I felt good today also, knowing she was doing well.

There is a certain level at which there is frustration that today seems to make yesterday’s grieving a meaningless waste of time.   I remain convinced that feeling the feelings when they come is better than burying them, in case things might change.  In our situation, they will change.  The grieving I did yesterday still counts.  I know where this is going.  I probably know too much having read emails written by folks in the throes of the worst this dementia has to offer.  I know too much from forty years of ministering to people going through terrible times of pain and loss.

Yesterday provided some preparation that needed to be done.  There will be more that needs to be done as we move to new and still more difficult stages of the disease process.  Having gone through the reality therapy yesterday, having grieved more the anticipated losses, today is all the sweeter.  She got to have today.  I got to have today.

This morning’s time at the lake offered great entertainment in all the displays by the birds.  I read a very meaningful devotional piece in the Spirituality Journal called Weavings.  The sky was crystal clear and the air crisp.  All of it combined to lift my spirits.

There were American Bald Eagles to watch again.  I saw a drama unfold, as a juvenile Eagle spotted a Canada Goose with a broken wing, walking across a road less than a hundred feet from me.  The drama happened about 150 feet away.  The Canada Goose managed to ward off the Eagle as he tried to make lunch of the goose.  While the goose did not have the weapons the eagle had (talons and powerful beak) the goose was bigger and heavier.  Later I watched from fairly close range two Red-Tailed hawks fighting over a kill.

Then there were the White Pelicans.  They are huge and have a magnificent wing span.  Their wingspan can exceed nine feet, much larger than an eagle.  One Pelican circled around and around until it was almost overhead.  They are blindingly white (especially in this morning’s sun) with contrasting black on part of their wings.  It was quite a sight. There were a variety of waterfowl coming an going.  It was quite a treat.

This afternoon, the time with the birders at a different lake was another treat.  I learned more about identifying a few birds and enjoyed talking with other folks with like interests.  We spotted an eagle, some Mergansers, Redheads, Ring-necks and Golden Eye water birds – along with the ubiquitous Canada Geese, American Coots, Mallards and Ring-Billed gulls.

After such a good day, I must add that I just went in to check on Mary Ann.  The hallucinations have started again.  She agreed to manage a treasury of come sort and was afraid she had messed it up.  So much of the time there is nothing I can think of that even remotely connects with the hallucination or dream.  Then she fainted two or three times as we tried to get to and from the commode.  I will take her blood pressure in the morning to see if some Midodrine seems warranted.

I think I am going to get whiplash!

Tomorrow is the appointment with the Neurologist.  The report will be in tomorrow night’s post.  I am anxious to see how the appointment 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.

 

February 24, 2010

Only One Good Day!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , |
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And that day was yesterday.  This morning she awakened up early and had the sort of borderline lucid but intense demeanor that usual signals the return of difficult times.  Her blood pressure was up again (200/110), moving us back to no Midodrine.

She did all right getting ready and eating breakfast (of course with me feeding her), and seemed to be doing reasonably well when I took her to her Tuesday Morning group. She apparently did very well in her group, tracking and responding (softly) appropriately a couple of times.  By the time I came to pick her up, she had started leaning to the side  Her eyes were closed and she was not responsive.

In the car I suggested some options for picking up food or eating out.  I was very apprehensive about the trying to eat out, but at this point I will do anything to get her to eat.  She liked the idea of eating at BoBo’s (the local diner that made the Food Network’s series on Diners, Drive-ins and Dives).  I thought about getting take-out, but fries and burger would be cold by the time we got to the house.  Mary Ann wanted to go in.

I knew it would be a challenge since her eyes were still closed and she was moving with great difficulty and struggling with communicating. I am now physically exhausted from getting her in and out of BoBo’s and feeding her.  Maybe I am also emotionally exhausted.

I got her into the booth, but she was leaning and having trouble sitting up.  I had talked with her enough in the car before arriving to be able to order right away, a cheeseburger, fries and a chocolate shake for her.  I ordered my usual fish sandwich.

As soon as the food arrived, it was obvious that Mary Ann would not be able to eat it by herself.  I moved her over and sat beside her in the booth (BoBo’s is very tiny with people on top of one another).  We were there shortly after 11am, so I hoped we would be in and out before the crowd — flawed thinking.

On the positive side, she ate most of the hamburger and shake.  However, feeding her was terribly difficult in that setting.  Since she could not sit up or hold her head up, I had to hold her up with one arm, using the hand on that arm to hold her head up, while using the other hand to feed her.  They had cut the burger into quarters at my request.  I am surprised at how physically challenging it was to hold her up that way while feeding her.

The shake was a special challenge.  At first, I used a spoon.  It is hard to communicate how difficult it is to get something soft and melting into a mouth that is hanging down over the table.  Her neck muscles are very strong and stiff, so pulling her head back to keep her mouth accessible takes all the strength I can muster.  She does not seem to balk at my pulling her up that way, so I don’t think it hurts her in any way.

After trying to use the spoon on the shake, I decided to wait and let it melt so that she could use the straw.  It was too thick for her to pull it through at first.  Later, after it melted, she was able to pull it up through the straw.  To make that work, I had to hold her head up with one hand (the one on the arm wrapped around her body) and hold the shake in her lap so that the she could get her mouth on the straw.  Again, the good news is that she drank most of the shake eventually. I felt pretty wimpy to be exhausted and sore from feeding Mary Ann lunch, but I guess I will have to accept that I am not as young as i used to be.

When we got to the house after BoBo’s, she was beginning to hallucinate a little (seeing a tube of something on the floor, there was nothing there).  After a trip to the bathroom, she went right to bed (about 12:45pm).

I am disappointed that it is appearing that this time we are getting only a little more than one good day after the last round of a couple of days of hallucinations and a couple of days of sleeping.  The last time we got almost three good days before the the troublesome ones returned.  Maybe she will be fine after a nap.  I guess it is apparent that I am not very hopeful about that.

The problem eating at BoBo’s today has the potential of having some lasting fallout.  There is now vividly ingrained in my psyche a disincentive to going out to eat.  I will need to be confident that she will not have such a difficult time and need so much help before risking eating in a restaurant.  I realize that this experience needs not to steal from us the freedom to go out.  Those feelings will, however, play into every decsion about whether or not to go out from now on.

She slept with only a commode break or two until 6pm when I got her some supper.  She allowed me to feed her, so she got a reasonable amount of food.  The hallucinations were not terribly strong during that time.  She sat in her chair for a few minutes after supper, and then headed in to lie down again.

She has the television on and has been restless for the last three hours.  I am at a loss to predict how things will go tonight and tomorrow.  Patterns just don’t ever stick with this disease.

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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