January 2, 2010

Happy New Year 2010!

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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Tired or not, it is a beautiful, frigid, but bright and sunny morning — a good way to start a new year.  I would like it to be on account of raucous partying, but this tired morning comes after attending to needs that continued until that midnight kiss last night. I finished editing last night’s post and got to bed at about 1pm.  Then every hour, on the hour, we were up with the usual, including two snacks, one at 3pm and one at 4pm. I should have known that a large bowl of ice cream would not suffice for supper.  That is all she was willing to eat — other than the four crackers and the handful of chex mix with a little Asti Spumanti at 8pm. The 2am and 5am activities were commode related.

Actually the 6am commode trip was at 6:20am, breaking the once an hour on the hour cycle.  At 7am, Mary Ann was up for breakfast and pills.  After an hour of watching television, she is now back in bed.  I, however, am wide awake and sitting here beginning this post!  I will continue later in the day.

It is about 3pm.  Mary Ann had a two and a half hour nap, then got up and ate lunch.  She has been watching television while I worked on a Christmas card list for this year or next.  Remember, it is the twelve days of Christmas.  I still have five days to go! 

Mary Ann changed the channel fifteen minutes before the end of the program.  I watched the end of it in the kitchen.  Just as it ended she got up and walked toward the kitchen, I presume to see what I was doing.  I came out to meet her and took hold of her to support her, then asked where she wanted to go.  We walked around the dining room table, and when we got to the other side, she asked where Pete was.  I reminded her that I am Pete, and she recognized me at the same time. 

Today she has been pretty disconnected with lots of little hallucinations.  At her request I gave her a dish of ice cream after lunch, and at one point she asked if the other one was mine.  She was seeing two dishes of ice cream in front of her.  Not realizing that the person helping her walk was me may have been a Capgras Delusion.  That is the delusion that a loved one has been replaced by an imposter.  It happened so quickly that it may not qualify as Capgras Syndrome.  A number of those in the online Caregiver Spouses of those with Lewy Body Dementia have to deal with Loved Ones who are experiencing Capgras Delusions.  The bad news about this disease is that it is a roller coaster ride with some scary dips.  The good news is that sometimes there great vistas on the peaks in the ride.  The goal is just to hang on for dear life!

It is evening now.  There was a visit by a good friend of Mary Ann’s.  She brought a bag of Christmas goodies.  Mary Ann did not really participate in the discussion.  I probably should have left the room for a while to see if they could converse one on one.  Today has been such a disconnected day for Mary Ann, I did not think she would be able to respond.  In retrospect, I should have given them a little time to at least allow the possibility that Mary Ann might respond. 

She went to bed at about 7pm.  I will give her the bed time cluster of pills in a few minutes, about 8:30pm.  That is the usual time she takes them even if she has lain down for the night before then.  A couple of the night time pills have sleepiness as a side effect. 

As I have continued the online Ignatian retreat, the focus now is remembering events in my adult life and their impact, any gifts they may have given, gifts that have helped shape who I am becoming. 

One event of monumental significance was the day the diagnosis of Parkinson’s was received.  I had moved to Oklahoma City ahead of Mary Ann and the kids so that each could finish at their respective schools, one graduating from high school and the othercompleting the Eighth Grade in an eight grade school.  I left in February to begin serving a congregation there and the family came at the beginning of June. 

While everything was as welcoming as it could be in the new parish, it was just about the toughest time in my life.  It was equally tough for Mary Ann and the kids.  Just the separation was almost more than I could bear.  I had not realized fully just how important Mary Ann and the kids were to me until that moment I watched the plane take off from the Oklahoma City airport after a visit.  I could not even tolerate the thought of life without the three of them. 

During those five months, Lisa had the added pain of dealing with the murder of the Principal of the tiny Lutheran High School she was attending.  His Daughter was Lisa’s best friend.  He had been a great support for Lisa during her years at the Lutheran High. 

Micah had developed close relationships with his classmates at the large Catholic Parochial school he attended from the Fifth Grade year through Eighth Grade Graduation.  He was chosen by his classmates to speak at Graduation.  The prospect of leaving those friends behind was tough on him. 

It was that March that the phone call came.  Mary Ann phoned me in OKC with the news that she had just been diagnosed with Parkinson’s Disease.  She had to deal with that life-shattering news by herself without my support.  I had to deal with it while among wonderful people with whom I had not yet developed any history.  Mary Ann was not willing to share the news with anyone else, her or my parents, her or my siblings, her lifelong friends, the people in the parish with whom we had just spent fifteen years building relationship.  For the next five years, that secret was to be kept from all but two or three people other than the kids.   We honored Mary Ann’s request, but it took a toll on all of us, especially when the symptoms became noticeable.

It is hard to put into words the impact that the Parkinson’s has had on our lives.  There is no way to even begin to imagine what our lives would have been like without it.  It is actually a waste of time to try to do so.  Time is too precious.  It is needed to live the life we have as effectively and meaningfully as possible.  We can process the impact of the Parkinson’s and assess its role in who each of us has become.  We have grown and learned more than could possibly be written in one blog entry. 

There is a level of maturity and wisdom that our children have come to have through dealing with their Mom’s Parkinson’s.  Earlier posts include sections they have written, reflecting on their experience in dealing with the Parkinson’s.  I am a far better and more effective pastor because of it.  Mary Ann has wonderful relationships with dozens of people directly due to the Parkinson’s.

While I am grateful for all we have learned from Mary Ann’s Parkinson’s, we would gladly have read a book on it if we could have learned those things without the Parkinson’s.   

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.

 

December 27, 2009

Day After Blue Christmas

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We are still pretty much snowed in.  Actually, the street and driveway have been clear enough to get out.  The main streets are passable according to the television weather folks, but many of the side streets are not   If we did try to get out, I am not sure what we would do and why.  Mobility in a wheel chair is pretty much compromised when there is snow and ice involved, even when shoveled.

We did not venture out today and may not do so tomorrow, although we will try to get to the Evening Service at church.  I am grateful for some meatloaf from the freezer brought by Maureen some time ago.  A couple of baked potatoes and half of a small head of cabbage rounded out supper.   There should be enough leftovers for tomorrow.  There is still cold meat and cheese from a Christmas gift brought over by former members — good people.  As always, I could eat for months on what we have in the freezer, but Mary Ann would starve. 

I am afraid the time here in the house together without break is wearing thin.  Today was an NCIS Marathon on television.  I like the program and find the characters entertaining, at least I did for the first few hours.  I wander back and forth to and from the computer and the kitchen, doing whatever chores there are to get away from the television. 

Finally, I moved to the kitchen to write some thank you notes and watch some news.  Mary Ann popped up and ended up on the Living Room floor.  She did not hurt herself.  As the grumpiness sets in, I found myself resenting the unwillingness to push the button next to her so that I could get there to help.  The video/audio monitor I use keep her in sight when not by her side  was by the computer.   I should have brought it into the kitchen, but I was not going to be in there long.  Taking the monitor from room to room through the day as I go back and forth and plugging it in so that I can see her just doesn’t seem very workable to me. 

I could be more assertive in insisting that the television be adjusted to my taste, but when she is not engaged in what is on television, she is up heading to one place or another, demanding my jumping up to be at her side.  It is far less difficult for me, if whatever is on TV captures her interest. 

It would have seemed reasonable to ask Mary Ann to help with the thank you notes to involve her in something other than watching television.  It is hard for both of us, but especially Mary Ann to accept how much she has lost.  Last year, I tried including her in the Christmas Card preparation.  She simply could not do any part of the task without utter frustration.  Finally, she tried putting the stamps on the cards.  She could not manage to get the self-stick stamps off the backing and then on the envelop anywhere near the spot they need to be.  She just gave up in frustration. 

It is hard to think about how much she has lost after being so talented in so many areas.  It is clearly very painful to her.  I think that what is hardest for her is the sheer boredom of not having things to do that she is able to do.  I am often disappointed in myself that I do not engage her more in trying to do things that mitigate her boredom.  I am so busy trying to entertain myself in between just doing the basic caregiving tasks, that I can’ t seem to bring myself to add more that might entertain her.   I am certainly not proud of that gaping flaw in my caregiving. 

During her nap today I began doing an online Spirituality Retreat using the Ignatian model.  There are different materials for each of thirty-four weeks.  It is provided by Creighton University.  I do not have a very good track record for keeping at such a discipline, especially in my current role.  I am hoping by attaching the retreat activities to Mary Ann’s daytime naps, I might find it doable on a continuing basis. 

The approach is to fold the central focus of that week into all the daily activities so that ultimately, it is running in the background of the retreatant’s mind no matter what he/she is doing at any given moment. 

The first week’s focus is on going through a picture album of the retreatant’s life using the mind’s eye.  The first couple of days focus on childhood, the second couple of days on teen through young adult years and the third couple of days the retreatant’s adult life.  The goal is not just to remember, but to tap the feelings associated with those events and look for learnings that came from them, gifts that both the good events and the bad ones left behind. 

I have some free software called iDaily Diary that I use for journaling on occasion.  There I will record reflections on the pictures that come to mind.  I may share bits and pieces if they are not too private and they relate in some way to the role of Caregiver. 

Enough for now.  It is late, and Mary Ann has been getting up pretty early the last few days.  I can feel the tiredness spreading through my mind and body.  Let’s hope for a good night of sleep. 

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.

 

December 23, 2009

Nap Day, Food Gifts and Wii

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I forgot to put the clothes in the dryer and it is well past midnight.  I thought I was going to just write a couple of sentences of update, but I don’t want to leave wet clothes in the washer overnight.  There will be items that need to come out of the dryer immediately and hung on hangers to keep from getting wrinkled while sitting overnight in the dryer. I will have time to write more than a short update.

When I was a child, I remember routinely finding a plastic bag of wet clothes in the refrigerator to avoid mildew until they could be ironed. The rest hung outside until dry — even in freezing weather.  In rainy or snowy weather they would be hung in the basement to dry.  By the way, Mom ironed everything, of course shirts and blouses and pants and skirts, but also sheets, pillow cases, handkerchiefs, T-shirts and underwear.  I am unable to run the iron.  It is an unfortunate disability that has no cure.

Today Mary Ann got up early and just headed out the door of the bedroom.  By the time she reached the door, I woke from REM sleep containing one of those pastor dreams in which there is a service that I am leading and I am not prepared, or something that I need can’t be found, or I have lost my place in the service book.  I guess I should thank her for ending the dream, but I certainly was not done sleeping.

I moved quickly and got her seated so that I could put on something and take her out for food and pills.  Almost immediately after eating, she agreed to lie down in bed for a while so that I could get a little more sleep.  She ended up sleeping for close to three hours.  I got about an hour and a half more of sleep.

After she got up, I gave her a sandwich for lunch.  Then came some reluctant intestinal activity, needing my assistance.  When that was done, she was very tired again.  She had fainted a couple of times before and after lunch.  She slept again, for about an hour and a half. Oddly, when she awoke, she was convinced that it was early in the morning.  It was actually after three in the afternoon.  She didn’t seem to believe me at first.  It took quite a while to finally convince her that it was not early in the day.

While she was napping Arlene came over with a plate full of fudge and candy she had made.  Wow!  Is that stuff good!  Later Glenn and Margaret brought over a plate of goodies.  They also are very good.  Yesterday afternoon, Don had brought over freshly smoked salmon and bread.  In each case we were the recipients of a wonderful gift of food and, in addition, some pleasant conversation — especially enjoyed by this retired pastor suffering from Diminished Conversation Opportunity Syndrome.

This evening our Kids from Kentucky (staying with us) took us out for an Anniversary Dinner.  Our little five year old Granddaughter, Ashlyn, was diagnosed with a Strep infection this morning, so she was not a happy camper today.  She was feeling well enough for us to go to Famous Dave’s and enjoy a nice meal.  I ran into one of the young people from the congregation I served here, reminding me just how much working with Youth meant to me over the years. (The majority of my 407 FaceBook Friends are Youth.)  Juli is a beautiful young lady inside and outside, with a heart of gold.  Her Mom is one of the Volunteers who stays with Mary Ann.

Dryer is done!  So will this post be done soon.

One interesting sidelight today is that Denis bought a Wii for the family.  They tried it out this afternoon.  They are going to love playing that, especially when they use it on their large screen digital television in the large family room at their house in Kentucky.  We tried to help Mary Ann do some bowling, but the coordination just isn’t there.  I have often thought about how beneficial it might be to have a Wii to help Mary Ann stay active.  She loves games.  I have been waiting for clear evidence that it will actually accomplish the goal.  It is too expensive to buy and then find out it is not helpful.

An update: Daughter-in-Law Rebecca’s Gall Bladder surgery went well today, and she is at home, feeling good (according to the last emailed report).  The email was titled “Weight Loss Program” using the removal of organs as the means.  She is a Corker!

Time to edit and get some rest!

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.

 

December 1, 2009

Sleepless Night — Domestic Duty Day

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I think it was around 3am that Mary Ann finally settled.  Then, we were up pretty early again in anticipation of the Bath Aide.  Mary Ann has done no napping today, and she did not go to bed early.  Some days she can sleep well at night, then have a couple of two or three hour naps during the day.  There seems to be no rhyme or reason to when there is lots of sleeping and when there is very little.

When there has been little sleep, I appreciate that I am retired and have no major public responsibilities that would be impacted by my sleep deprivation.  I guess driving is a public responsibility.  If you see a dark colored Honda van coming down the street, give it wide berth.  The driver may be dozing.

Today has turn into a domestic duty day.  It was not planned that way, a couple of things just converged on the day. Both the medication that thin her blood (aspirin and Plavix) and the mucous production increase on account of the Autonomic Nervous System being impacted by the Parkinson’ s and Parkinson’s Dementia, combine to create the need often to change the bedding.  Today was not the usual day to change bedding, but I noticed that even the mattress pad that is protected by two chux had some stains on it.

I got out a new mattress pad and put the dirty one in the downstairs utility sink along with stained bedding, and a two or three ladles of Oxyclean.  After soaking a few hours,  and then running it through the washing machine, it is all in the dryer at the moment.

Then the weather for today and tomorrow allowed working on a much dreaded task. The Ceramic tile floor in the bathroom is a dangerous weapon in a household with someone who has both balance and fainting problems.   After a nasty fall and subequent trip to the Emergency Room, followed by a couple of hours with the Ear, Nose and Throat Specialist trying to get the bleeding stopped, I realized that the tile floor needed something to soften a fall.

I found something called Snaplock, twelve inch squares of mesh made of a strong and supple plastic mesh.  The squares snap together.  The colors were nice and the squares were easy to put together.  The squares are impregnated with something to reduce the mold.  Of course the squares must be taken up and cleaned a few times a year.  The weather is important, since the tiles get washed in the driveway, and dried in the sun.  I scrub them with an old broom after spraying them liberally with spray cleaners that kill mold as well as cleaning the tiles.  They then air dry.  They are on the driveway tonight.  I will leave them there and bring them in after the sun has done its work.

The hardest cleaning task actually is cleaning the ceramic tile that has been covered by the mesh squares.  Mold eventually grows under the tiles.  There is lots of spraying (Tilex and Clorox Cleaner), scrubbing with the broom, and rinsing that has to be done.  It is certainly worth the effort to have the protection on the ceramic floor.  Any Caregiver whose Loved One is subject to falling needs to be sure and cover ceramic tile with something safer.  Gratefully, the Snaplock tiles come in very nice colors, so the result after putting them down is not unappealing.

Blood Pressure update:  Now that I have reduced in half the Midodrine in preparation for starting the new medicine, Mestinon, I am trying to track her BP more closely.  Sitting down at the table earlier in the day, her BP was 107/65.  Tonight while lying down I tried taking it with the electonic meter.  It would not read her BP but gave an error message.  That usually means it is too high for the machine to measure.  When I took her BP by hand, it was 240/120.  There was no doubt about when the beat started and stopped while listening with the stethoscope since the beat was so strong.

That is another example of just how dramatically her BP jumps between high and  low.  Tomorrow morning I plan to add the generic Mestinon.  I hope it works.  I don’t know how long it takes to reach the therapeutic dosage. We will just wait and see what effect, if any, the new medicine has.

As always, we will see what tomorrow brings.

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.

 

November 30, 2009

“I’m Disoriented”

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I just went back into the bedroom for one of very many times so far this evening to check on her.  When I asked her what was causing her to be so restless, she answered, “I’m disoriented.”

She has been moving around in bed this evening, lifting herself up on her elbows and looking around.  I have become conditioned to head to the bedroom when I see much movement on the 7″ baby monitor screen on my desk next to the computer monitor.  I move fairly quickly so that she doesn’t get up and try to walk on her own.  Especially when she first gets in bed after taking her night time meds, she is vulnerable to falling due to the drowsiness that is a side effect with a couple of the pills she takes at that time.

Clearly the drowsiness has not been enough to send her off to sleep tonight.  She did not sleep well last night.  It is surprising just how much impact one restless night has on her.  She has been doing lots more hallucinating today.  As usually happens, she got up early this morning, after not having slept much at all last night.  She fell a couple of times trying to pick up things that were not there.  She popped up often from her transfer chair, sometimes unsure of what she was getting up for. 

She went back to bed after being up a while this morning and slept about three hours.  I was glad she got some sleep.  The more tired she gets, the more she struggles with hallucinations, tracking mentally, keeping her balance when walking, among other things. 

Tonight, she is just struggling to settle down to sleep.  The last time I went in she said that she was feeling guilty that the house was not clean for the cleaning lady.  I reminded her that the monthly visit from Kristie would be Wednesday, and it is only Sunday evening.  Earlier, when I was getting her ready for bed, she thought she heard the voice of the main character on her favorite television program, the Closer.  She knows that the show airs on Mondays.  She was convinced it was Monday evening.  I reminded her that just an hour before then we had returned home from going to the Evening Service at church.  Somehow even that did not seem to satisfy her. 

The next time I came she was getting completely out of bed.  She said she was looking for things to do to get ready for the cleaning lady.  As we talked about it, she asked what I did to prepare for her coming.  I described the prep I usually do, taking things off the table so that she can get to the top to clean it, taking things off the kitchen counter, putting all the toiletries in the baskets on the bathroom vanity, just general straightening up to make her job a little easier.  I reminded her that there would be no point in doing that prep work until Tuesday evening or Wednesday morning, otherwise it would all be spread out again by the time Kristie came. 

It always seems odd to me when Mary Ann juxtiposes a very lucid comment (that the cleaning lady comes this week) and confused perceptions (what day it is today).  That is the nature of a Dementia with Lewy Bodies.  Parkinson’s Disease Dementia is such a dementia.  Unlike the general pattern of steady decline associated with Alzheimer’s Dementia, LBD changes for the better or for the worse very quickly.  Someone with LBD can be very lucid one minute and completely confused the next — then moments later return to lucidity.  That characteristic often causes friends and family who do not interact with the person with LBD on a daily basis to be fooled about how serious the disease is.  Those with LBD are notorious for moving into what we (Caregivers) call “showtime” when family or friends or strangers are present, creating the illusion that they have not problem at all. 

Again, it just surprises me to see how much impact one restless night can have.  She really has seemed to be very lucid the last few days, at least most of the time.  I guess I should read the last few days’ posts to be sure about that.  I forget so quickly from one day to the next how things have gone.  It is like trying to remember what you had for lunch two days ago.  Sometimes the routine things just don’t make enough of an impression to find their way into the memory bank, at least into the branch from which subsequent withdrawals can be made with ease. 

She has been in bed for about three hours now and has been restless most of the time.  The thought just crossed my mind that some of the restlessness may come from concern for our Daughter, who is having surgery tomorrow.  It is a surgery that is considered outpatient but will include one night of monitoring her during the first hours after the surgery.  Mary Ann may not be able to identify the true source of her inability to settle.

For the moment, all I can do is hope that she (and I) sleep better tonight than last night. 

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

 

November 12, 2009

Sleep! Sweet Sleep! Plus Physical Demands

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , |
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Whatever happens today, last night we both got a good quality, long night’s sleep.  Mary Ann is still sleeping.  It is a little after 9:30am.  Because of Veteran’s Day yesterday, Bath Aide Zandra did not come.  She has arranged to come later this morning, so Mary Ann will need to be up soon.

Later: Mary Ann made it up in time to get her meds taken before Zandra arrived. She has had another loose stool (sorry!) which has been happening for many days now.  It raises the question as to whether or not there might be some sort of bug causing some of her problems.  We will wait it out.  So far it is manageable.  i just want to be sure Mary Ann doesn’t get dehydrated.  Checking urine color (sorry again!) should provide evidence one way or the other on that.  We will not involve doctors and hospitals unless there is something clearly demanding that involvement.  If the weight loss continues, I will probably phone the GP’s office for a recommendation of a supplement.  Actually, I will also check with the LBD Spouse Caregivers online group.  They have far more experience with what works than any medical professional.  It seems clear that Mary Ann is just not getting enough calories in to maintain her weight.  Oh how I wish I could painlessly transfer about twenty pounds from me to her. I tried to get her to eat a some spectacularly sweet and tasty and moist cherry (homegrown and canned) and nut coffee cake that Maureen brought yesterday.  She just wouldn’t eat anything.  I, of course, had a huge piece.

After the intestinal activity, Mary Ann decided to lie down again.  She has seemed very tired since getting up this morning.

Gratefully, whatever strain lifting Mary Ann from the floor the other night seems to have been healing on its own.  The physical demands on Caregivers are often substantial and constant.  When I read the online posts of other caregiving spouses, I wonder how on earth they can do it.  Most of them are women, many of them my age or older.  Some of them have husbands who weigh two or three hundred pounds (one is a former heavy weight boxer).  I have no idea how they deal with the demands.  Many have a Hoyer lift to use when necessary.  We have one also, but have needed to use it only a couple of time in the years we have had it.

The physical demands of course include helping Mary Ann up from the floor when she falls.  Our system is not necessarily recommended by physical therapists, but has worked for us for many years.  When she has fallen, I work at sliding her (by pulling on her legs) into an open space where she can lie on her back with her feet toward me and her head away from me.  I put my feet together in front of hers so that they won’t slide, she reaches up and I take hold of her hands.  I rock back, using my weight as a counter balance so that my back is not involved in the process of lifting.

The risks in that approach are mostly to Mary Ann’s arms and shoulders.  Again, since she is not heavy and we have been doing it for so many years, her arms and shoulders seem strong enough to manage.  So far there have been no noticeable side effects to that process.

One of the movements that has created problems for me in the past, is that which is required to turn Mary Ann in bed and move her to the center of the bed so that she doesn’t risk falling off the side of the bed (been there!).  We have single, adjustable beds.  For many years she has been able to climb on all fours on to the bed and flop down one way or another.  She has come very close to flopping right off the edge of the bed on to the floor.  Now, most of the time she simply cannot negotiate that movement.  When she tries, she usually gets stuck on all fours on the bed or with one foot still on the floor, unable to move any farther in the process.

Now, most often she sits on the side of the bed, and if she wants to lie on her left side, facing the television, I cradle her and twist her in a sort of dramatic swinging motion until she is facing the appropriate direction.  Then I lean forward, slide my arms under her and pull her toward me to center her on the bed.  That is the motion that has caused back pain in the past.  Now, I squat down and let my body weight (lot’s more than her body weight) pull her to the center of the bed.

If she wants to lie on her right side, the side of choice for her, again, she sits on the side of the bed.  I let her head down to the pillow and reach with my right hand to lift her feet on to the bed.  Then I travel to the other side of the bed to pull her to the center.  Since the size of the bedroom does not allow much space between the two beds, I often can’t seem to get accomplished the motion using my body weight.  Most often, I slide my arms under and just pull her to the center with my arm muscles, a movement not unlike doing a curl.  Again, that keeps from involving my back in the process.

Now with that image in mind, imagine the nights she is up every few minutes.  One of those two actions of moving her to the center of the bed happens every time she gets up, even just to sit on the side of the bed.  When I watch her on the monitor, if she begins to move at all, I head in to see what she needs.  Sometimes she just needs to be turned from one side to the other, or the covers have gotten twisted out of place.

When we travel, the large beds pretty much preclude my reaching under her to move her.  I can do some manipulating to help position her, but most of the options are simply won’t work.  If I try to move her much, it puts my back at risk.  It won’t help her if I am debilitated.

At the moment, one of the activities that is the most risky for both of us, is the trip to the commode.  I pull her up to a sitting position on the side of the bed and pull the commode close enough so that it only takes a transfer with a few side steps to get her into position, pull down her Pj’s and disposable and get her seated on the commode.  That part is pretty straight forward.

The risky part comes when she is finished.  I pull her up and hold her so that she can use the TP I have handed her.  Most often, she just cannot balance well enough to stand on her own.  I hold her with one arm, feeling her weight against it, knowing that if I let go she would fall back down on to the commode and over the back of it into the wall (does that description ring of experience?).  While holding her with one arm, I have to reach down first to pull up the disposable (we call it a pad), which of course binds since I can only pull from one side, the other hand attached to the arm holding her up.  It is hard for her to remember and then to have the dexterity to move her knees apart enough to get the pad through and pulled up.

Then come the pajama bottoms next.  They have always gathered at her ankles.  Reaching down all the way to the floor with one hand while holding her with the other high enough to be above her center of gravity so that I can keep her from falling challenges my flexibility and strength.  When I think of it, I remove the PJ bottoms so that I can put them on her in a separate action while she is safely sitting on the side of the bed.

The commode trips come very often since one of the problems of a compromised Parasympathetic Autonomic Nervous System is the need to urinate frequently.  The last time Daughter Lisa stayed with Mary Ann over a couple of nights, she shared with me that she was pretty concerned about the risks associated with the night time commode trips.  Both of our children are very concerned about the precarious nature of our situation.  They recognize that it would not take much to mess up our system.  If I am not able to handle Mary Ann, either due to her physical condition or mine, a whole new set of challenges would emerge.  None of us wants even to think about it, although it is hard not to do so.

One other activity has become more challenging since the hospital.  There are more times when she can’t open her eyes, and/or is almost too weak to walk making the short trip from the door to the car pretty difficult.  If this continues, I will set up the aluminum ramps and roll her down the two steps to the door of the car in her transfer chair.  Oddly, steps are far less problem to handle than walking on a level floor to those with Parkinson’s.  Steps usually are her best thing.

While I need cardio-vascular conditioning exercises, I think I am getting plenty of upper body strengthening in this caregiving role.

It is still only mid-day, but this has gotten far too long — as have most of the recent posts.  She is still sleeping.  I hope to get her in the car and to the grocery store this afternoon.  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.

 

November 12, 2009

Visit to Former Life

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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No, I do not subscribe to people having former lifetimes in other times in history.  Last evening I spent some time back in a part of my life that seems a distant memory even though it ended only sixteen months ago.  It is as if my forty years of ministry exists in a former lifetime.  There were feeling swirling around throughout the evening.

The fire happened three years ago.  I got a distressing phone call from the Rector of the Episcopal church, St. David’s, across the intersection from the church of which at that time I was the Senior Pastor.  I called Mary, who was willing and able to come over and stay with Mary Ann freeing me to rush over to check out our church and give Fr. Don some moral support.

It was arson.  The damage was extensive.  It was painful to see such an important place in the hearts and minds of so many people rendered uninhabitable in a few hours.  The vision of an elegant organ console charred and pipes melted, in a heap on the floor beneath the balcony is almost unbearable to those who have sung to that organ, whose spirits have been lifted by it for numbers of years.  I did not go in and see it.  I am remembering from the comments of some who did.

I had the privilege of being able on behalf of our congregation to offer support, a place to hold the first worship on the Sunday following the fire.  I will never forget that worship Service early in the afternoon, after our three morning services were concluded.  The church was packed with the members and friends of St. David’s Congregation.  There was a bond created that day that has since brought continuing joy to both our faith communities. The pattern of worship and the visual style of the worship rooms of the Lutheran and Episcopal traditions are virtually identical.  They felt at home in the worship space and we felt at home with the liturgy they used.

Last evening was three years later to the day in a journey that began in ashes and ended in celebration of an elegant and functional space for a faith community to live out their call to service.

When I arrived, the Nave was full.  There was space in a multipurpose room outfitted to allow us to participate fully in the service, though in a place far from the central worship space.  The feellings swirled.  There were some feelings at first, ones of which I am not proud, feelings that I was now relegated to a place far on the periphery of what had shared with my family a central place in my life.  I am grateful that my feelings moved away from feeling a loss of worth and value, to recognizing what the evening was about.  A community of people had taked a powerful hit and come out stronger that ever.  I got to touch their lives for a moment three years ago.  The night was about them and what had been and would be accomplished through them by the One we both serve.

Later in the evening there were some words of thanks that touched me deeply as Fr. Don acknowledged by name those people and faith communities who had supported them after the fire.

The contrast between the world in which I live now and the world in which I lived sixteen months ago is stark.  It was moving to be back in a liturgical setting with a large number of worshipers gathered, listening to and singing with a pipe organ, instrumentalists and choir producing powerful sounds, singing loudly in the midst of the congregation.  The moment was a poignant one for me as the forty years of ministry with its hopes and intentions and dreams broke into my awareness.  Current circumstances in my life and the needs of the congregation from which I retired have converged to provide a clear separation from my former life in the ministry.

What settled in my mind and heart last night is that my goal has been to impact those I served in a positive way as our lives intersected for a time. Whether or not it is remembered is quite secondary.  My hope is that my ministry had a positive effect on most of those I served in the three parishes and the high school these last four decades.

Now my goal is to make a difference for good in the life of someone I love deeply, even though I don’t always show that love as clearly as I should.  So that I could attend St. David’s new building dedication last night I arranged for a person from Home Instead an agency that provides people trained to do Companion Care.  It will cost between $60 and $70 for that care for Mary Ann, but I felt I needed to be there for my own sake and to provide a formal presence for my former parish. Needless to say, it is not feasible to use agency care very often.  I am grateful to have an income at all in this economy, but a fixed income does demand care in how and when that income is used.

Mary Ann has been up for most of the day today.  Last night did not start out too well, but after a while, she settled and slept soundly.  She has had a reasonably good day.  She ate with only occasional help needed.  She napped in the morning for a couple of hours, but has been awake and sitting up most of the day.  There were two Volunteers here at different times.

She went to bed around 7pm (less than an hour from this writing), and she is awake now watching her beloved NCIS repeat episodes.  It would be a wonderful experience to have a sleep-filled night tonight.  Time will reveal whether or not that comes to be.

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.

 

November 11, 2009

Wake up! Go to Sleep! Please!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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It was a night from Hell.  We have plenty of them.  I went to be early in hopes that my presence would help her sleep.  Not so.  She wanted to go home more than once.  Often she would get up and when I asked, admit that she didn’t know why she had gotten up.  Once she woke up and said she had swallowed a snake.  I have no idea from where that thought came.

It went on through the night.  Once there were only seven minutes between times of getting up with some need.  The next one was twelve minutes.  Then came a couple about twenty minutes apart.  I am just tired enough that I went back to sleep during each of those short times, only to be wakened again.  I am not sure what words to say to communicate the level of frustration with that behavior.

One of the times she got up, she agreed to go to the table and eat some applesauce.  We started toward the dining room, and soon it was apparent that she just couldn’t walk well enough to make it there.  I asked her not to move, while I ran a few feet to get the transfer chair.  Of course she fell.  My level of frustration was enough that while I was complaining about her not staying still, instead of patiently working out how to get her off the floor in a way that was safe for me and her, I just picked her up off the floor and seated her in the chair.  Yes, she is only a little over 120 pounds.  No, a small 66 year old man with a family history of back issues should not try to pick up someone from the floor, someone who is not able to help in the process, essentially dead weight.

While it hurts, at the moment (six or seven hours later), it is not excruciating.  I am hoping only minor damage was done and that Advil, ice and a call to Chiropractor Tim will eventually take care of it.

Last night, all I wanted was for her to go to sleep!  She got up early again.  I just insisted that she stay in bed so that I could get another hour of sleep.  Gratefully, she did stay in bed for a while.

When she got up, things were pretty difficult.  I, of course, was not in a very pleasant frame of mind having been up and down every few minutes during most of the night.  She was able to get some of her food eaten by herself.  After breakfast she sat by the television in her PJ’s.  She was in popping up mode.  While at the moment, she is not fainting, her weakness and balance are making her vulnerable to falls.  I got a phone call.  Just as I got into the conversation, she hopped up and headed across the room.  I was frustrated by the timing of it, but after determining it was a bathroom need that precipitated it, I got off the phone and got her into the bathroom and seated.

I have not mentioned this much in the last three days, but there has been intestinal activity verging on diarrhea.  Sunday morning when I was gone, she had some major activity.  That activity required a later cleanup that involved removing the toilet seat, taking it to the large basin I had installed in the basement storage area for things like this, soaking the toilet seat in water with lots of Clorox Bleach, scrubbing the hinges with a toothbrush, rinsing, drying, disinfecting the stool itself and replacing the toilet seat.  This is all taught in Caregiver school.

The good news is that the activity does not come often.  It is just takes some extra effort to keep her and whatever else clean.  We have dealt with much worse in this area.  This morning’s trip to the bathroom was not an easy one.

When she returned to the living room, the popping up continued.  She was almost always getting up to look around at the floor.  I don’t know exactly what she was seeing, but it was some sort of mess that needed cleaning up.  Just going into the kitchen to get a bowl of cereal had to be done in short segments of time, often less than a minute in length so that I could check on her and get her seated again.

I had not yet gotten my morning shower.  I could not trust her to stay seated for the ten to fifteen minutes it takes for me to get ready.  She often agrees that she will stay seated, but pretty much does not do so.  I finally realized that the only way I was going to get ready myself, would be for her to be napping.

There is such an conflict of wants and needs that converge on this simple process.  I want her to stay awake during the day and sleep at night.  I want her to be sleeping even during the day so that I am not dealing with the popping up, the constant needs, the hallucinations, not knowing what will come next.  I should keep her up in the daytime, but when she moves into her need-for-sleep mode, she ends up hanging her head and sleeping in her chair, if not in her bed. There is a sense of relief when she is sleeping during the daytime hours, but a dread for the horribly frustrating nights that come when she can’t sleep then.

I suppose I could sleep during the day while she is sleeping.  I don’t want to shift days and nights for both of us.  I want to be tired enough at bed time that I can go to bed and sleep, if she will allow it.  When she is asleep, I have the freedom to do things that nurture my own well-being both for my own sake and so that I don’t lose the capacity to care for her.  These posts have been long and detailed lately because she is sleeping enough during the day that I am free to write.  These posts have been long and detailed these last days since we are almost entirely homebound now and the task is frustrating enough that I need the outlet of writing these posts as therapy.

Then there is the question, how is Mary Ann dealing with this new place in our experience.  She is stuck with the frustration of not having the mobility and mental acuity she has had, and she is stuck with Grumpy Caregiver who gets frustrated with things she cannot control.  She vacillates between days when she is exhausted and just wants to sleep, and nights when she can’t sleep, wants to be up while the person on whom she depends is scolding her and insisting she stay in bed.  She needs food but often not what is in front of her.  She hates the feeling of needing to be fed but often needs to be fed.  She wants to do things for herself but is constantly being asked to sit down, being reminded that she can’t do them.

I wish I were better at this caregiving task.  On the positive side, I think that most of the time I act in ways that are caring and helpful and affirming of who she is.  I try to treat her with respect, recognizing that my words are not always respectful when I am frustrated with some difficult behavior that seems still to be under her control (probably most often a result of the disease more than her willfulness).  I work hard at keeping her neat, hair washed, dressed appropriately, the house in order, beds made, kitchen in order.  I work very hard at determining what she needs or wants and if it is possible, trying to provide whatever it is.  With that said, in fairness, my assessment is based on who I want to be, not necessarily who I am in her eyes.  In the area of this sort of self-awareness, my propensity to feel guilty when I have been unkind provides some internal metrics.  My self-centeredness drives me to do things that allow me to feel good about myself.  My batting average in that task is probably just that, painfully average.

Back to our day: When med time came after she had been sleeping for a couple of hours, I decided not to make yesterday’s mistake.  After I took her to the bathroom, she stayed up for us to head to Glory Day’s Pizza to bring a couple of slices home for her (lunch and supper).  Her mobility was very poor, and she still would not open her eyes, so the trip out to the car and back afterward was pretty difficult.

She insisted on eating the slice of pizza without help.  She only managed to eat the topping (cheese only) from a little more than half of the one piece.  Then she was done.  After refusing once, she finally agreed to a dish of ice cream.  She is about five pounds lighter on our scale than she was the last time she weighed herself before the trip and the hospital.  She has been eating so little it is no wonder.  When I took her to the bathroom after the pizza, as I was getting her clothes down so that she could sit on the stool, she stopped me, asking what I was doing.  She thought we were still in the dining room.

At about 4:45pm, she wanted to get her bed clothes on and get into bed. She got up again when a paid worker from Home Instead to stay for a few hours while I honored a commitment that was important to me.   She was still up when I returned and went to bed at about 9:30pm.  Let’s hope for some sleep 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.

 

November 5, 2009

Day After Hospital Stay

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , |
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This has been something of an odd day.  Mary Ann woke up seeming fairly alert. Very soon, she shifted to a minimally responsive mode.  For much of the day, her head hung down on her chest.  She seemed ready to roll forward out of the transfer chair.  The bath aid when she was here, Volunteer Margaret (our Parish Nurse) when she was there or I needed to hold her shoulders up to keep her from going over.

She had a routine Mammogram this afternoon.  It was quite a struggle for two techs to get her positioned and hold her up for the x-rays.

She did a little better after a mid-afternoon nap, but resumed the head down position again after a bit.  Supper was a challenge for her, but she did get a fair amount eaten.

The hallucinations have continued.  I have been back and forth a number of times as I have been trying to write this post.  For the most part, she is saying things that don’t really make any sense.  She starts to say something and then stops, apparently losing track of it or recognizing that it makes no sense.  This has been one of the more challenging times in our journey.

I recognize the head on the chest problem from many of the posts of those in the caregiving spouses of those who have Lewy Body Dementia online support group.  Again, I am hoping that this is just a temporary dip into the Parkinson’s Disease Dementia.  Since we live so close to the boundary between lucidity and confusion, there is always a fear that we will move over that line permanently.  This particular type of dementia, is very unpredictable.  People can move in and out of lucidity and functionality seemingly at random.

There have been only minutes between needs for the last hour or so.  The last trip was for another visit to the commode, just five minutes after the previous trip to the commode.  As we were taking care of that, she asked if we were going home.  I said that we were home and pointed out her quilt hanging on the wall in the bedroom.  That seemed to satisfy her for the moment that she was in her own bed.

It is these times of utter confusion that are among the very hardest for me to handle.  The constant needs that cannot be satisfied since either the words make no sense or what she sees has no substance are very wearing.  Right now it appears that this will be another sleepless night filled with constant frustration.  Then again, maybe not.  The signs are not good at the moment.

Another trip to help her sit up — lots of words that made no sense.  She did agree that she wanted to go back to bed.  We will see how many minutes pass until her next need to get up for something indiscernible.

Five more minutes, another trip to the commode.  This time she wanted something to eat.  She decided to go to the table for a snack container of applesauce.  She took my arm to walk (our usual pattern), then she wanted to continue with the walker (very difficult for her to handle), then she recognized that she needed the wheels (transfer chair), and finally we made it to the table.  All those changes happened in the span of about twenty feet from where we started at the bed to the table.

She usually feeds herself when she has the applesauce, but that wasn’t working for her tonight.  I offered and she chose to have me feed her.  After some difficulty with her trying to get something off the bed, something that was not there (didn’t I see that pile of whatever it was), she is now back in bed for how long — I don’t know.  It is about 11:30pm.  She said that Zandra would soon be here.  Zandra is the bath aide who comes in the morning two days a week.  Zandra was here this morning.

She seems to be stirring again.  Let’s see what it is this time.

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.

 

October 15, 2009

Can I Keep her Awake Another Day? Should I?

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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I think not!  We made it through today, but it took much coaxing and insisting and endless activity. She did not sleep very well again last night.  There were about as many trips to the commode, changes in position, drinks of water as have been so for the last few nights.  She was up at 7am, laid back down while I showered and got up for the day immediately thereafter.

I got her hair washed, got her dressed and delivered her to the circle meeting well before it was time to begin.  On the way home after the meeting, I suggested getting a movie or two for the late afternoon or evening to keep her awake.  When we got home she wanted to nap.  Since it was lunch time, I was able to keep her up for that.  Then she wanted me to leave her home while I took the car in for an oil change.  I thought about doing so, but since she was still up we just got in the car and headed to the Honda place.

When we got home after that, the television kept her attention for a while.  We ate supper,  watched one of the movies, and now she has just gone to bed.  My goal has been to keep her up during the day until finally she will sleep soundly through the night (with just a few commode trips) and we can return to a more manageable sleep pattern leaving both of us better rested and reducing the hallucinations.

Colleen commented on last night’s post: “Your comment about sleep reminded me of children.  The more tired they are, the more hyper they get, and the less likely they are to sleep.”  Before I read that comment, I had decided that tomorrow, if she wants to nap, I will not try to keep her up and busy, but just let her sleep.  Colleen’s observation may very well explain what is happening.  Keeping her up may actually be making it harder for her to sleep through the night. It is far too soon to determine if this will be a sleepless night or a sleep-filled night.

By the way, supper tonight was a treat for both of us, even though I did the cooking.  It was a meal simple enough even for me to prepare. When Edie came to stay with Mary Ann on Sunday (providing a meal, as she always does), she mentioned that they had just picked many green tomatoes.  We sent with her Mary Ann’s Mom’s recipe for green tomato relish.  I mentioned that it made the best glaze for a ham known to humankind.

Guess what was delivered to our house last evening while I was at the local Audubon Society presentation?  There were a couple of jars of freshly made green tomato relish and a huge slice of ham about an inch thick, ready to be cooked.  I wrapped a couple of sweet potatoes in foil and baked them until they were soft and moist, ready for the butter and brown sugar, spread the relish on the ham and broiled it (per instructions on the wrapper), opened and heated a can of peas, and the feast began!  The only moment of concern came when the relish under the broiler began to smoke.  I had visions of alarms sounding and fire trucks gathering.  Gratefully, the newly cleaned smoke detector was no longer too sensitive [see earlier post].

The movie we rented was The Soloist.  It was is engaging account of someone who managed against seemingly insurmountable odds to make music.  While our situation is far less dramatic and hardly compares to what the character in this true story encountered and, apparently, still does, the movie encourages the idea of living meaningfully, no matter what.  That is precisely the goal toward which we are drawn.

On that note, the Alien presence from planet Pedometer Prime had its way with me again.  I walked once outside at Cedarcrest and once in the mall while Mary Ann was at her Circle meeting.  Then came a powerful attack by the Alien.  Before it was over, I committed to a five week exercise and weight reduction program at Rebound Physical Therapy.  This lack of sleep must be getting to me also.  My resistance is down.  There is confusion from synapses that have not had time to connect as they do during that deep sleep that is so important to us.  Have I finally simply gone completely mad!!

One last note:  She has already been up for a couple of drinks of water, saltine crackers and a snack-sized container of applesauce.  Is it possible that she can have still another restless night?  The answer to that question will come soon enough.

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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