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

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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 24, 2010

Too Quiet!

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , |
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The laughter therapy program has hit the road.  The Joy/Terry/Cherri serum moved on this morning.  I have suggested to them that they designate themselves The Three Therapists (like the three Tenors) and develop a supplemental source of income.

Mary Ann was determined to get to her Bible Study this morning.  We left for church while the three were still at the house.  Actually, it made the good-byes a little easier. The process of getting out of the house this morning resulted in our being a few minutes late for the Bible Study. She had a mild fainting spell.  Mary Ann hates being late, but the group was tolerant of us when we arrived.  I felt bad interrupting, but I knew Mary Ann needed the time with them.  Apparently, she did reasonably well there.

After the Bible Study, we headed to McFarland’s to eat.  Mary Ann did reasonably well there also.  At the end of the meal, she seemed to weaken.  I needed to accept the help of a thoughtful customer to get her coat on as she tried to stand in front of her wheel chair.

It was not long after we got home that she ended up in bed napping.  That happened just at the time Hospice Nurse Emily arrived to check in and do Vitals.  Mary Ann’s blood pressure was about what it should be for a twenty-five year old.  It vacillates so much that I am seldom surprised by how high or low it is when measured.

Mary Ann slept soundly for a few hours this afternoon.  She got up for supper, but was in bed again fairly early this evening.  So far she seems to be sleeping well.

While the Hospice Nurse was here for a while, and the workers were using power saws, providing some noise and activity, it just seemed too quiet around here with the crew from the north on their way back home.  I realize just how boring life is much of the time for Mary Ann.

Certainly all the activity did wear Mary Ann out.  It will be interesting to see how much sleeping she does in the next couple of days.  It is a very good tired.  What a wonderful way to become worn out.  I suspect that the endorphins released by the laughter are still working their healing magic inside of her.

The challenge for me will be to find ways to bring interest and stimulation into her days.  It is a daunting challenge.  I have tried before with very limited success.  The limitations that have come with her recent decline have made the challenge even more difficult.

The day will be busy tomorrow. At the end of next week, Daughter Lisa and the family will come to stay with us for about a week.  Combined with the remodeling project, I hope there will be enough to keep her engaged.

Right now, we need some prayers for Granddaughter Chloe (11 years old), who has not been able to shake a undiagnosed problem with nausea that has been going on for a couple of weeks.  Prayers are for a clear and concise diagnosis and effective treatments, please.

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

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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 22, 2010

Teens Arrive! Laughter Begins!

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I am witnessing a working Time Machine (the machine itself being completely invisible).  There were sitting at the table tonight, gathered around a couple of pizzas, four teenaged girls talking and laughing as if their bodies were not a number of decades older than that.  Mary Ann was fully engaged.  Her voice may have been soft, but she was a part of it.  She laughed along with the rest.

These four have known each other since the Fifth or Sixth Grade.  They have a world of memories since they went all through high school together.  They have kept in touch throughout the decades that have passed since then.  They graduated from East Aurora High School (in Northern Illinois) in 1959.  Every time the four of them get together, they continue on as if they have barely taken a breath since their last visit.  It is one continuing conversation.

They traveled a long way to come and see Mary Ann.  I know it means a great deal for her to see them again.  Of course, painfully, it will likely be the last time they get to be together.  I would not, however, bet on it since Mary Ann has demonstrated such resilience over the years.

Mary Ann began the day early again.  After the often fought battle to get the last hour or two of sleep in the morning, she was alert and responsive.  Again, as has happened often recently, she fainted a number of times on the stool as there was some otherwise healthy intestinal activity.

Volunteer Jan had arrived and took over after the fainting spells subsided.  Again, it the fainting seems to associate with both the kicking in of meds and intestinal activity.  Jan washed her hair and did her nails for her, while I headed up to the lake for a while.  The lake was beautiful.  I was immediately treated to views of some raptors, hawks, an eagle.  One of the hawks could have been a leucistic Red Tail Hawk.  I do not know enough about birds yet to be certain about that.  There were aome of those beautiful White Pelicans, flying in a relaxed formation of about twenty, circling over the lake, and over me at various times.  Again the bright white contrasted by the black portion of the wings that span five or six feet made watching them a breath-taking experience.

There was another less pleasant experience at the lake.  Remember the snow that I shoveled yesterday?  There was snow at the lake.  I drove only on paved roads, with little enough snow and slush and ice on them to avoid problems.  I got to my spot in the parking lot near the dam without trouble.  When I left, I went out the other side of the lot, up that road.  There was a fairly thin layer of wet snow on it.  I did fine as I approached the last few feet.  The top of the snow did not reveal that the road beneath dipped.  When I moved into that last bit of road, the van stopped moving.  I ended up stuck in a snow bank that did not reveal itself on the surface.

The simple solution was not so simple.  I tried to back out so that I could back down to the lot and go up the road on the other side.  The van would not budge.  The snow was wet enough that it just packed and formed an icy base under the wheels.  Having learned to drive in the winter in northern Illinois, my pride was hurt.

There were no others on the road in the area, until a passer by in a four wheel vehicle stopped.  It took a very long time of studying the predicament, trying to rock the van back and forth (tough with an automatic transmission).  Finally with the good Samaritan pushing on the front of the van, I was able to begin backing down the hill.  Once back in the parking lot, I was able to get back up the hill using the road by which I had come down to the lot.

I stopped for groceries in preparation for the visit of Mary Ann’s Friends, and made it back home.  After eating, Mary Ann stayed up much of the afternoon.  She did nap in her chair with her head on the rolling table that sits in front of it.  By the time Joy, Terry and Cherri arrived, she was rested enough to greet them and enjoy them.

Two are in the hotel and one staying downstairs.  My hope is, of course, that Mary Ann will sleep well tonight so that they can continue tomorrow from where they left off tonight.  The construction will continue with sanding sheet rock joints and the multiple corners tomorrow.  We will see if the construction activity moves the group to the hotel lobby seating area.  The birds entertained today.

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

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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.

 

March 19, 2010

Good Friends — Great Day!

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

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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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 16, 2010

Missing Skill Sets

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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She liked it!  She actually liked it.  Those of you who have been reading this blog for a while know that I struggle to provide tasty meals for Mary Ann.  I will eat almost anything (except Okra, Oklahoma friends may remember).  Mary Ann, however has a discriminating palate.  That is a classy way of saying she is an annoyingly picky eater! She has been a phenomenal cook when she still used the kitchen.

I can hardly claim the high road here.  I am a hopelessly unskilled and lazy cook.  Give me a four gallon pot and a refrigerator of odds and ends, a few cans of beans and tomatoes and I can make a pot of soup that is nourishing and filling, if not tasty.  I am pretty much the only person who will eat the soup that I make.

People keep telling me that all I need to do is follow a recipe.  They forget to mention that there need to be ingredients purchased, seasonings on hand and enough experience to understand what the heck the recipes mean.  They tend to leave out instructions for things “everybody” knows how to do.  Then there is the issue of getting things for the meal all done at the same time, so there aren’t cold mashed potatoes with a hot roast.

Anyway, she liked it.  She had wanted a pork roast.  She usually doesn’t suggest meals, especially now that words are very few.  She picked out the roast. at the store.  Of course the choices did nto include a pork roast like the ones we used to have, the ones with the bone, lots of fat, and the tenderloin still attached.

I browned the roast in a pan with some olive oil.  Then put it in a large rectangular glass baking dish.  I surrounded it with large hunks of cut onions, red potatoes cut in half, and a half cabbage cut into quarters.  I put salt on all of it since so many veggies would need it.  I sprinkled a little garlic powder on all of it.  I covered the roast with dried thyme.  I deglazed the browning pan with some beef broth.  (Are you impressed yet – “deglazed” — am I cool or what?)  Then I poured that over everyihing, added a little more olive oil on top of the veggies and cooked the heck out of in the oven for a couple of hours.

It was good!!!  She liked it. I liked it.

We also had a windfall.  Don and Edie brought over a meal from the Baptism dinner.  Today, Shari who stayed with Mary Ann this evening brought over tonight’s supper.

Gratefully, our Daughter, Lisa, has made a number of items for the freezer that I only have to thaw and heat.  What a blessing.  She did that while she was here with Mary Ann when I headed to Oklahoma for the three day retreat.

There are lots of people who find themselves in the position of lacking certain skill sets to fulfill all the needs that emerge because of the circumstances that they are in.  When a household has a couple of adults and some children in it, the tasks get either divided or shared, depending on the skills each adult has.  Even in households with two or more adults, there still may not be some skills needed to sustain the household.  In that case, the people in the household earn money to pay someone who does have the skill set that is missing.  Plumbers and electricians come to mind as those who might be paid (now or later, if an unskilled household member tries to fix whatever it is).

People whose life circumstances change may find themselves lacking needed skill sets.  It happens when there has been a divorce.  It happens when a spouse dies.  It happens when  a key member of the household becoms disabled.  It comes with the territory for anyone who happens to be the only one living in the household.

There is inside maintenance, outside maintenance, accounting and money management, automobile maintenance (what and when and whom do you trust).  I am sure you could add lots to that list.  For Caregivers, the task is often complicated by the sheer wieght of dealing with all the personal needs of someone else as well as his/her own.

I have to admt that in my case, many of the missing skill sets are not ones that couldn’t be gained with a little effort.  Therein lies the rub.  Effort is in short supply.  Yes, a lot of it is just laziness.  I have not always been adventurous in learning how to do new things.  I am a procrastinator, and as a reault, I often just don’t get the learning process started on a new skill in time to do what needs to be done.

The skills that are necessary to full time caregiving include food preparation (unfortunately — especially for Mary Ann), managing a household, managing finances, good decison-making (lots to be made on your own), medical diagnosis, communicating effectively with medical professionals (both listening and talking), basic CNA skills in assisting in toileting, showering, dressing, feeding, washing hair, basic household duties such as washing clothes, making beds, cleaing the bedside commode, cleaning up after meals.  Those of you who are Caregivers can, I am sure, add at least as many more tasks that come with the territory.

So, as do each of us who have total responsibility for keeping a household functioning, I do what I can do, find others to do the things that I am currently not equipped to do well, and ignore the rest.  Just don’t look to carefully if you come to visit.

Actually, I have decided only to have very low maintenance pets in the house to keep us company.  At the moment, we have only Dust Bunnies as pets.

Today went reasonably well for Mary Ann, but there was a lot of sleeping, in spite of very loud sawing and banging on the outside walls soon to be removed.  I hope she sleeps 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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