“What day of the week is it?  What month is it?  What year is it?  Remember these three words, pen, car and watch.  Do you ever feel hopeless?  If so, is it all of the time, most of the time, some of the time, a little of the time?”  Tim asked those and very many other questions.  He asked Mary Ann if I was being nice to her.  I made a point of leaving the room for some of the questions, so that my presence would not skew her answers.  He got a current list of medications.  He checked for any changes in the information from last year.  Tim is a Case Manager from our local Area Agency on Aging. By the way, Mary Ann did not do quite as well as usual.  She aced the day of the week and the month, but could not come up with the year.  In the past she has usually remembered at least two of the three words.  He always asked three or four times during the interview what the three words were.  This year she was not able to manage remembering the words at all.  On the positive side, the number of falls has been reduced dramatically.

If I understand correctly, there is such a place accessible to most everyone.  Our Area Agency covers three counties.  Tim comes a couple of times a year.  Once is the major information gathering time.  The book the Agency puts put out each year has hundreds of resources listed on its many pages.

It is through Tim and JAAA that we connected with the local County Health Department.  In fact, coincidentally, Public Health Nurse Linda from the County Health Agency will be coming tomorrow for her assessment.  She comes every couple of months.  It is through her that we have had Bathe Aide Zandra for the last few years every Monday and Wednesday mornings.  We pay for that service (around twenty dollars a visit).  Those who do not meet certain income guidelines have reduced fees for the service.

Nurse Linda brought us our flu shots this fall.  She visits to see if the Bath Aide situation is working well.  She checks to see if we have any other needs, although there are many limits on what she has time or money to do for any given situation.  She and Tim are always interested in Mary Ann’s falls, any physical problems that might have to do with her safety and the quality of her care.

Even though we are pretty well self-sufficient, it feels good to know that there are folks out there paying attention to our needs, whom we can call if major problems emerge.  We can get help finding and evaluating resources.

By virtue of being active in a church, we have additional resources available to us.  Our congregation has a Parish Nurse.  Margaret is available a couple of hours a week at church to check blood pressures.  She comes to visit regularly to bring flowers and food and help out in any way she can.

In our case, the cadre of Volunteers from church is a major support.  As I often mention in these posts, they come and spend time with Mary Ann, enriching her days, giving her social contact and a break from my constant hovering. The visits also give me a chance to run errands, or meet with friends over lunch/coffee or head out for a breath of fresh air, or have some time for reading and meditation. Sometimes, as happened earlier this week, they bring food.

One of the major support systems for me is the online group of Caregiver Spouses of those with some form of Lewy Body Dementia [LBD].  That group has so much in common that we can be completely open in sharing our frustrations and fears in language that would scare those who have not been through what we are going through.  We can share ideas that actually have been tested in the lab of daily living with LBD or PDD [Parkinson’s Disease Dementia].  It is surprising how much it helps just to discover that what your Loved One is experiencing matches what many others are experiencing.  We are able to talk in a matter of fact way about things that would be terrifying otherwise.

In the course of writing these posts I have often mentioned Mary Ann’s Tuesday morning group.  That is part of her support system.  The Spiritual Formation Group that meets at our house on Wednesday mornings is a part of my support system.  Those groups, corporate worship experiences and personal devotional experiences combine to nurture our Spiritual health.  Sustaining friendships to the degree possible also helps us maintain a level of equilibrium in our out of control corner of the world. The local Parkinson’s Support Group provides the chance to have some face to face time with others dealing with the same challenges.

Whether or not you are aware of it, those of you who read this blog are important to my ability to continue in the role of Caregiver without losing my bearings.  During each day, I think about what is going on in our lives with an eye toward what I will say in the post I will be writing next.  As I write about it, what has gone on in that day or two begins to come into focus, allowing me to gain some sort of perspective on it.  That perspective steals from it the power to disable and destroy.  The struggles are difficult enough to deal with, without my giving them more power than they already have.

While just writing about the day and processing the events is helpful by itself, it is the awareness that there are people reading those words that brings with it some external validation.  I have only numbers on a metrics page and a few comments to verify that there are people out there listening, but it makes a difference knowing that you are there.

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Have aliens come and stolen my Mary Ann, replacing her with with a look alike imposter???  She ate the whole thing!  Mary Ann ate the chicken salad that I made from scratch with my own culinary-challenged hands. 

On three or four different occasions in the last few days, I put a couple of spoonfuls of that home-made chicken salad on her plate.  It is shredded chicken (from the freezer, prepared by our Daughter Lisa when she was here), grapes, pecans, celery, Miracle Whip, some fresh dill and a little onion powder mixed together.   She ate every bit of it every time I put it on her plate.  Potato chips and Pepsi rounded out the meal each time. 

If that is not enough, when I listed the options for supper tonight, she chose the beef, potatoes and carrots I had cooked in the crock pot the other day — and she ate it!!!  Now do you understand why I have posited the alien imposter theory?

On another matter, last night I asked three questions of the people in the online Caregiver Spouses of those with Lewy Body Dementia: 

The first question was about Mary Ann’s hair.  It seemed as if there was more hair than usual coming out on the brush when washing and combing her hair recently.  I asked if others’ Loved Ones had experienced hair loss.  Some Loved Ones have lost their hair, with no explanation from their doctors.  Group members mentioned the dry air at this time of the year, stress, too much washing, thyroid problems, and Discoid Lupus Erythematosus (DLE).  Since the problem seems to have subsided, I suspect it was just a natural occurance with no long term implications.  Needless to say, I will pursue it if there is more evidence warranting it.   Mary Ann’s hair is thick and dark with some gray mixed in.  She routinely gets compliments on how nice it looks. 

The second question had to do with disinfecting items in need of washing.  At the risk of being indelicate (I have been painfully explicit many times before), when there is need for cleaning matter (euphemism) off clothing before putting it in with other wash, I use Clorox in the water in a downstair sink we had put in for such things.  The last time I used the Clorox to disinfect some clothing, it was new red plaid pajama bottoms from LLBean.  I moved very quickly in the task of putting the pj bottoms in the water, swishing them around to get all the matter off, then rinsing and squeezing a number of times to get the Clorox water out of them.  Needless to say, they magically turned from red plaid to pink plaid pajama bottoms.  The suggestions from the group included OxiClean and Vinegar.  After some checking, it appears that OxiClean may and Vinegar certainly does disinfect pretty well.  I will probably substitute a 5% vinegar solution for the Clorox water when this need arises again. 

The third question had to do with disposable underwear.  The latest marketing tool is to replace unisex disposables with disposables specifically for men and for women.  The problem is that the women’s are made to be more comfortable for daytime use by enlarging the leg holes.  The net result is that  while they may be fine when up and walking, they leak badly if there happens to be a daytime nap.  Daytime naps are routine for many who need disposables.  I asked the group for suggestions of disposables that work for them.  I have had no responses to that one yet.  I suspect one reason is that the vast majority of those in the online group are women caring for their husbands.  The needs in this area are gender specific. 

One other note concerns a member of the congregation that I served before retiring.  He has had Parkinson’s longer than Mary Ann, over thirty years.  He fell and ended up in the hospital.  He has a strep infection that is interfereing with the healing of the arm on which the skin was broken when he fell.  In Emailing back and forth with his Daughter, I noted that people in her Dad’s and Mary Ann’s circumstances live in a narrow margin of functionality.  This fall and infection are taking Norm to the Rehab Unit of a local nursing home for a while.  He has been declining for the past few weeks.  Apparently, the treatment for the infection is helping him regain much of what he has lost in the last six months.   

In a sense, we are living on the edge.  In reality, all of us are living on the edge.  Anything can happen at any time.  Those who are in circumstances like Norm’s and Mary Ann’s are just more aware of it.  We can choose to live in terror of what might happen, or we can just choose to live. 

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In the past, Mary Ann would do almost anything to avoid going to the dentist.  Dr. Ron when we were in Oklahoma City and Dr. Bob here have had a gentleness that won her over.  She goes four times a year now, without balking.

Four times a year may seem more often than necessary.  During the years we had dental insurance, it only paid for two of the four times each year.  Why four?  Two reasons: 1. lack of manual dexterity; 2. lack of adequate caregiving.  This is among the many things of which I am not proud.  I just can’t bring myself to do the mouth care for Mary Ann that she cannot do herself.  I have no excuse.  I do a reasonable job of a number of other things, but not that.  Going to the Dental Hygienist four times a year helps compensate for the lack of good care at home.

As is so often the case, medication that does much good in one area of health care can create problems in another area.  The combination of Plavix and Aspirin helps protect against another stroke as bits of plaque can break loose from the lesion on the wall of one of Mary Ann’s carotid arteries.  That combination of meds thins her blood to the extent that by the time the Dental Hygienist is done, there is much bleeding.

After each cleaning of her teeth, we put a Chux (absorbent pad lined with plastic) on her pillow so that the blood from her gums will not stain the bedding.  We learned to do that the hard way, as is so with most of the things we have learned over the years.

There was a point at which we were looking at multple thousands of dollars in potential work on her teeth.  Dr. Bob has managed to keep her mouth in pretty good shape without doing major work.  The prospect of many hours in the dentist chair with the vacillations between stiffness and involuntary movements did not make major dental work an acceptable option.  There were a couple of extractions along the line.  Surprisingly, Mary Ann found the extractions easier than having crowns done.  She was surprised at how fast she was in and out of the chair when the extractions were done.  She had no problems associated with those procedures.

Actually, the dental issues that come with Parkinson’s are seldom mentioned.  We have tried a number of electric toothbrushes.  Mary Ann has a very small mouth providing little room for normal sized brushes.  We have often gotten children’s toothbrushes.  Even the smallest head for an electric brush does not seem to work for her. The manual dexterity needed for brushing teeth is just not there.

Along with many other diseases, it is often problems that are not directly caused by the disease process itself that come to be the most troubling as time goes by.  They are things that are not symptoms of the disease but rather consequences of its long time presence.  As an example, I am watching the skin on the underside of Mary Ann’s forearms.  She spends most of her days in the transfer chair, with her arms resting on the arms of the chair.  I am watching to be sure that the skin under her arms does not begin to break down.  The impact on her dexterity and spatial judgment affects the ease of eating and drinking, making her vulnerable to weight loss and dehydration.  Our Cardiologist feels that the heart issues were a result of the intense dyskinetic movements that are a side effect of the primary Parkinson’s Medication after many years of taking it.

When a person becomes a Caregiver, it is not enough to listen to and read about the disease itself and its symptoms.  It is interacting with others, in support groups, online communities, talking with other Caregivers, reading what has been written by people who have either had the disease or cared for someone with the disease that provides the full story.

I had the advantage of being in a profession that took me into hospital rooms often many times a week. Folks made a point of sharing their medical problems with me as I ministered to them.  As I looked and listened, I learned much of what has helped me tune in to Mary Ann’s problems.  I learned how to talk with and listen to the medical professionals, making it easier to ask the right questions and understand the answers.

For now, I just hope the gums heal and the bleeding subsides.  It is surprising how helpful it is to use a cold substance to ease mouth discomfort after a visit to the dentist.  A chocolate shake from Sonic did the trick this time.  Did you know that Sonic just switched to using real ice cream in their dessert specialties (shakes and sundaes and blasts)?  Does that news leave you also wondering what it was they used to make those treats before they switched to real ice cream?

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.

It is just too soon to tell.  Mary Ann is now taking two medicines to help control the fainting due to low blood pressure when standing (Orthostatic Hypotension).  One is the standard med prescribed to control the bouts with fainting, Midodrine.  The second is a medicine prescribed off-label for helping control the BP.

I just read a post on the online of Spouse Caregivers of those with Lewy Body Dementia.  That post had specifics about their larger dose of the new med.  I have been thinking lately just how helpful it has been to be a part of that online group.

The group is a place where those who are in the throes of very difficult caregiving can vent without judgment.  In fact the opposite of judgment comes.  There are words of acceptance, affirmation of the validity of the feelings of those venting. Everyone in the group understands the crazy ups and downs that come with this disease.

Reading the many hundreds of posts over the last year or two has helped me handle things that might have frustrated me more had I not known what to expect.  I knew not only from past experience but from the group that the aftermath of the hospital stay might be a problem.

We can ask one another how her/his Loved One reacted to a particular medicine or dosage of that med.  Even alternative medications can be discovered in the posts.  There are some who see a particular doctor at the Mayo Clinic who specializes in Lewy Body Dementia.

We can talk with one another about waste management issues without having any concern for speaking in an indelicate way.  There are things that can be shared there that would not be appropriate in a blog like this.  We can talk in ways that might scare those who were not going through this particular challenge.

One thing I have gained by reading those online posts is perspective on Mary Ann’s and my situation.  The struggles of some in the group are beyond imagination.   We are among those who have been dealing with Parkinson’s the longest, but others have been dealing with the dementia much longer than we have.  Not all the spouses have Parkinson’s, but all have some form of Lewy Body Dementia or a related diagnosis.  For some the dementia has reached the last stages, where we are in the mid-range of the usual progression of the disease.  With that said, the truth is, the disesase vacillates so dramatically, that most of us have seen earlier and later stages of the disease in our Loved One’s at various times – with no warning that a change for the better or for the worse was coming.

With the perspective of the reading those posts, I celebrate how much we are still able to do, the quality of life still available to us.

Mary Ann did reasonably well today.  We slept a little later this morning, a good thing for both of us.  The morning routine is pretty time consuming, leaving too short a time to allow us to participate in a morning filled with activity at church, including a Pancake Breakfast.  We did benefit from some leftovers brought over early in the afternoon.  When she was up in the morning before her nap, she was not at her best.  There were many times that she had her eyes tightly shut as we tried to walk to and from the bathroom.

Mary Ann actually ended up in bed late in the morning for a couple of hours of napping.  After eating some of the leftovers, we went out in the car for a while, ending up with ice cream.  Our first choice for ice cream this afternoon has gone out of business, Maggie Moo’s.  The format is the same as Coldstone Creamery, only with much better quality ice cream.  We ended up at Sonic.

She was pretty alert this afternoon, and headed to bed sometime around 7pm or 7:30pm.  She has been a little restless, but as always, I am hoping for a restful night for both of us.

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Mary Ann liked the chili.  At first she could not negotiate the spoon well enough to get anything into her mouth.  For whatever reason, her compromised spatial awareness (from the stroke or the Lewy Body Dementia or both) makes it difficult for her to use the spoon as intended.  Most often it gets turned over so that all she gets is what sticks to the back of the spoon.  It works for ice cream and sticky foods, but not for liquids. Sometimes she can get the spoon turned upright, but she can’t keep it level enough for a liquid to stay in it long enough to make it into her mouth.

After I crumbled lots of saltine crackers into her chili, soaking up the liquid, she was able to get a portion of it eaten.  She tried to cut off a piece of the freshly baked, very tasty, cinnamon roll so that she could eat that.  I saw her struggling with it and used the spoon to divide it into a number of pieces that she could pick them with her fingers.

We were sitting at a round table eating with former parishioners who pretty much took for granted Mary Ann’s struggles with eating.  They knew not to pay too much attention or offer to help, thereby making Mary Ann more uncomfortable.  The family at that table with us had lost two members, the Daughter and Wife of one, and the Mother and Sister of the other, both at a comparatively young age to a form of Alzheimer’s Dementia.

I quietly offered to assist Mary Ann by feeding her, but as expected, she refused the help.  She was clearly getting very frustrated, more so than she has in the past.  Since this was a church dinner provided by the Junior Youth and their Parents, there was not a menu with various items to choose from.  There was no option of picking something that would be easy for her to eat.

It is clear that we will need to check the menu for the next dinners at church to be sure there is something there that Mary Ann will be able to eat without much help.  Tomorrow evening is the Parkinson’s Support Group dinner.  While that group has other members who are debilitated, at the meetings, Mary Ann is usually by far the most limited in physical ability.  I hope that she is able to handle the meal.

What is at stake here is the potential loss of one of our main activities outside of the house.  Mary Ann has done pretty well at not being deterred from going out by the difficulty she has eating.  Her frustration this evening was intense enough that it could negatively reinforce the experience of eating out to the extent that she will just refuse to go.  She has always wanted to go out to eat.  We would eat every meal out if I would acquiesce to her wishes on the matter. As eating in public becomes more of a problem for her, she is beginning to let go of the need to go out.  While I am glad for the money we save by eating at home, we need not to cloister ourselves in the house.

Mary Ann napped for a couple of hours this afternoon and went to bed fairly early also.  She commented on the fact that is was a long day, the Bath Aide at 9am this morning, the Service and dinner this evening. She slept fairly well last night, and at the moment, she seems to be settled in.  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.

There is smoke coming out of the china cabinet!  You had better wash that bedspread, there is dirt all over it.   Is that cat real?  The cat question was a bit encouraging since she did not simply assume that it was real.

She accepted my offer to feed her when she just couldn’t seem to negotiate her bowl of “Little Bites” shredded wheat.  She had managed most of the yogurt on her own.  She again had trouble getting the straw to work as I tried to get her to finish the Miralax in water.  That is one of the most important items in her medication regimen.  At first she wanted to drink without the straw, but there was no way to get her head erect enough for the water to make it in her mouth.  In the hospital, when she was most disconnected at night, she couldn’t manage to suck on the straw, but blew through it instead.

There have been some moments of lucid interactions.  As she was lying down for a nap (about an hour after getting up), she mentioned lisiening to the “radio” meaning the book on CD that we were listening to on the trip.

By the way, she did sleep better after the applesauce last night.  It is a good thing.  I was running out of patience with the constant needs every few minutes.  There were more times up throughout the night, but there was enough time between them to get some sleep. She did get up pretty early this morning.

I am starting this post early in the day in hopes that I can get to bed earlier tonight.  Of course, my hope is that Mary Ann will be able to get to sleep at a reasonable hour and stay asleep other than a few trips to the commode during the night tonight.

It is now mid-afternoon.  It continues to be a very difficult day.  After her nap, during which I wrote the paragraphs above, we attempted lunch.  There was a piece of Glory Days’ Pizza left from yesterday.  That is her favorite.  I cut it up for her, and she managed a few bites of it with her fork.  Normally, she has no trouble eating small pieces of pizza with a fork.  Finally, I needed to help her. As she had yesterday, she tried to take a drink of Pepsi and set the cup down on top of the pizza on her plate, seemingly unaware that she was doing so.

She ate a few bites of her favorite green Jello, Cool Whip and cottage cheese salad that Mary brought yesterday.  After a two or three spoonfuls she was done.  I offered her a chocolate chip cookie.  She could not negotiate holding it and getting it to her mouth.  I helped her eat half the cookie.

We drove over to Doug and Marikay’s so that I could get a much needed haircut.  She sat with her head down during that time.  When we drove back by the coffee shop, I offered to use a buy one get one free Dairy Queen Blizzard coupon.  She just couldn’t answer intelligibly.  I concluded that she did not want any.  She would not have been able to handle eating it at the DQ, but we could have brought them home.

Moments ago, she wanted to go to the bedroom for some reason of which I was not aware.  When we got there, she wanted to get dressed for bed and was irritated that I didn’t realize what she thought was obvious.  I explained that it was only 3:30pm, and she recognized that it would be too soon to go to bed.

She is now listening to the book on CD that we started on our trip to Hot Springs.  What a dramatically different place we are now, less than a week from the time we were enjoying there.  I just asked if she had any pain or anything was hurting.  She said clearly that she was not hurting in any way.  Her head remains hanging, but she seems to be awake.  I don’t know if she is able to follow the book, but at least at the moment she is remaining in the chair.

I continue to hope that at some point she will snap out of it.  Right now, we would not be able to manage going out to eat in a restuarant, one of our main treats.  This is a whole new place in this trek, a place we would rather not be.

So far this is a pretty distressing day.  She is lying down again.  It is about 4:45pm.  I asked her earlier if it would be okay for us to go to the Parkinson’s Support Group tonight.  She connected with the question and said it would be.  Then a while later she fell while I was on two phone calls, one a survey from our Financial folks on the land line and another on the cell phone from our Son who is on vacation with his family in Colorado.  They had just seen an American Bald Eagle as they were driving along.  She decided she did not want to go to the Support Group meeting.  She said she needed to lie down.  There had apparently been lots of drainage from her mouth the last time she was napping.  I hadn’t noticed just how much it was earlier.  I changed the bed and have her bedding and pillow in the washing machine at the moment.

I am writing lots today, I suppose on account of the need just to talk about what it going on.  This is a new level of need.  At moments like this there is a sense of isolation that comes, recognizing that even with all the support we have from so many wonderful people, ultimately we are on our own as we deal with this.  No one can do it for us.  Others have lives full of needs that they must deal with.

I am, of course, confident of the Lord’s Presence.  Even the Lord experienced a sense of isolation.  It is helpful to recognize that kinship.

On a lighter note, I forgot to spring the live trap this morning after there was no raccoon to be found in it.  A squirrel managed to trip it while foraging for seed that had fallen into the trap.  Is he going to have a story to tell!  He moved like lightning when I opened the door to the trap.

There may be more to tell as the evening wears on, but I will post this now and write more later or tomorrow.

Addendum: Mary Ann got up from her third nap today just long enough to change into her pajamas.  The sheets needed to be changed again on account of the drainage from her mouth.  The washer and dryer are getting a workout.  Logic says that tonight will be a restless night since there were three naps today.  I guess my hope is that she is sleeping off the confusion and will soon return to normal. 

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.

At tonight’s Parkinson’s Support Group, one Volunteer got a taste of what it is like for her husband with Parkinson’s.  The Physical Therapist speaking to the group had her stand on some foam rubber and try to stand on one foot, then stand with her eyes closed.  She struggled to keep from falling.  She would have, had the Therapist not caught her.  The therapist then asked, how would you like to spend every waking moment struggling to deal with that kind of disability.  The therapist was addressing the Caregivers present.

I had two reactions: one was a feeling of guilt because I too often with impatience push Mary Ann to move more quickly doing whatever it is; the other was irritation that the terribly difficult task of the Caregivers was not acknowledged and appreciated.

The reality is that both reactions are valid.  All of us who are full time Caregivers lose patience and forget that those for whom we are caring can’t do the most basic things without great difficulty.  That they manage to do what they do is a testament to their courage and determination.

Caregivers have the impossible task of trying to anticipate the needs of another person who may not be able to verbalize those needs.  Then the Caregiver must put those needs ahead of his/her needs no matter how small or great they may be.  Caregivers also suffer from the whatever the disease their Loved One has.

I guess the only solution is to learn how to live in the tension between those two realities.  Forgetting just how difficult life is for someone with Parkinson’s or any chronic debilitating disease generates bitterness and frustration.  Denying the overwelming and draining task of being the arms and legs of another person as their Caregivers diminishes the ability to cope and find any joy in life.

It helped me to be reminded tonight of what Mary Ann is going through.  Better understanding of her plight makes it easier to treat our daily challenges as obstacles that need to be overcome, rather than relationship issues between us.  We are in this together.  We need all our intellectual, emotional, psychological and Spiritual resources to meet and defeat the real enemy, the Parkinson’s and its consequences.

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It has just turned into an impossibly frustrating night.  Mary Ann is in hallucination mode.  We were on hands and knees with her face within inches of one of the wheels on a leg of the bed, and she said, there it is, the baby raccoon.  Not long before that, she told me a raccoon had “taken a dump” on the sheet at the foot of the bed, and asked me to clean it up.  It took a long time of looking at that sheet for her to accept that the poop was no longer there, although since then she has not allowed me to pull the sheet up over her.  For the last half hour she has been picking up needles with thread in them from the floor.  I turned on the overhead light with four 60watt bulbs burning brightly and put her glasses on her face so that she could see clearly what was and was not there.  She still kept picking up the needles fearful that someone would get them stuck in a foot.  

I am now at the computer looking at her on the video monitor as she is leaning over the side of the bed busily trying to pick up things from the floor.  I am helpless to do anything about it!  I can only hope that at some point she will get tired enough that she will lie down and go to sleep.   She went to bed at about 9:30pm, it is now 11:30pm.  This could go on for hours. 

Tonight there was a Volunteer here with Mary Ann so that I could be at the computer attending an online Webinar provided by the Progressive Supranuclear Palsy (PSP) online support group.  PSP is in a family of diseases that overlaps with Lewy Body Dementia (LBD).   Parkinson’s Disease Dementia (PDD) is a Dementia with Lewy Bodies. 

While the specifics of PSP are somewhat different from PDD, the Caregiving dynamics are pretty much the same.  The primary presenter tonight was Janet Edmunson, whose husband, Charles, was diagnosed with PSP.  After he died, the autopsy revealed that a more accurate diagnosis was Cortical Basal Ganglionic Degeneration (CBGD) which is another in the family. 

One of the characteristics of PSP that she mentioned certainly rang true for Mary Ann (who is now up and at it again in the bedroom).  She called it impulsivity.  That means the person remaining convinced that he/she can still do things he/she is no longer able to do. 

I just made another trip into the bedroom to see if I could do anything to help her settle.  This time as I was trying to get her back into bed, she told me that she was cold and wanted to go home.  When I asked her where she was, she didn’t know, just that she was cold and this wasn’t home.  I asked her to lie down for a while under the covers so that I could finish writing and come to bed.  As she was starting to lie down, Mary Ann commented that the girl was going to fall on her head, but then the girl didn’t.  When I asked who it was, she said, Lisa (our Daughter).  When I asked where Lisa was, she said she was on the wall.  When I asked her if it was the real Lisa or a picture, Mary Ann said something about “the pick of the litter.”  She did recognize when she said that that it made no sense. 

Back to the Webinar.  Janet Edmunson listed some suggestions for Caregivers. 

  • Determine what you are passionate about and find a way to spend at least a little time regularly, keeping it in your life.
  • Explore life’s adventures, store up memories while you and your Loved One are able. 
  • Give yourself credit, affirming just how strong you have been even when pushed to the limits.  She quoted Eleanor Roosevelt’s comparing people to tea — we don’t know how strong we are until we are in hot water.
  • Give yourself grace (forgive yourself) when you blow it.  If you seem to be “blowing it” extremely often, get help. 
  • Accept that some friends will no longer visit, especially when your Loved One can no longer communicate.  It doesn’t mean they no longer care.  Suggest that they come in pairs so that they can talk with each other as your Loved One simply listens. 
  • The personality changes in your Loved One are not your Loved One, but the disease.  One of the consequences of the disease is that the filter, the value system, gets eroded. 
  • Consider using Hospice sooner rather than later.
  • It is normal to grieve even before your Loved One dies.
  • Look for gifts that only this type of tragedy can afford.

She concluded with this wish for Caregivers: May this make you better, not bitter. 

Well, I think I had better get into the bedroom and see if my going to bed helps any.  Her head has stayed still for the last few minutes.  By the way, when she was first getting into bed tonight, for some reason she asked me to take her blood pressure.  It was 110/70.  Can’t ask for better than that.  Her pulse is usually 60 or less, but this time it was 89.  I suspect the excitement of the hallucinations may have increase her heart rate.

It is now 12:30am.  Here is hoping and praying that she can stay settled for the night. 

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It was just an off hand complaint when someone in our online group was venting. To paraphrase: She puts the toilet paper anywhere but in the toilet.

I chimed in that during the night, about one in three makes it into the commode.  Then came reply after reply.  I am not sure how many responded when that thread of emails came to an end. It was certainly a surprise to me that so many had exactly the same situation.  Some used grabbers to pick them up and get them in the right place.  Some found them in all sorts of places, often wastebaskets instead of the commode or toilet.

It was sort of comical to hear everyone pop up with their agreement that their Loved One did the same thing.  After a number of replies, one of the group brought some perspective into the stream of comments.  When we look back on this minor annoyance, it will be of little consequence.  Some in the group said they would love to be back at the stage during which their Loved Ones still had the ability to use the TP at all.

I wonder if Occupational Therapists have classes in how to improve the throwing arm of those who struggle with their aim?  I take for granted that one of my jobs is getting what has landed on the floor where it needs to be.  It is not even an issue (or is it tissue — sorry, couldn’t resist) for me.  It was just interesting to me when I noticed my own feelings after seeing all the replies from so many with exactly the same situation.

I felt comforted, sort of normal, on realizing that the Lewy Body Dementia had that same result in so many other households.  It seemed to remove any inclination to be bothered by something so common to others.  It reinforced that that particular habit is one that is a consequence of the Lewy Body Dementia.  Knowing that seems to help reduce the annoyance quotient of that particular behavior.

After last evening’s post, you can imagine how good it was to hear someone else caring for his wife say, “She doesn’t eat what I fix.”  It just makes a diffeence to hear that so many of us have the very same problems as we try to care for our Loved Ones.

None of us wants our Loved One to be debilitated by this disease.  None of us wants to have so many unpleasant tasks added to our daily activities.  As long as this is our life, somehow it helps to know that we are part of something outside of our control, something that is neither our fault nor is it the fault of our Loved Ones.  It is just a n consequence of the disease we are all dealing with.  It is normal – our version of normal, but normal.

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He was just a teenager having fun.  He just didn’t know how shallow it was.  He did exactly the wrong thing, tucked his chin down and dove in.  That was twenty-five years ago.  He was eighteen years old when it happened.

By now he doesn’t really consider the life he might have had, who he might have been had that day so long ago gone differently.  He is who he is, and he doesn’t dwell on what might have been.

We attended our local Parkinson’s Disease Support Group meeting last evening.  Rod Kelley was the speaker.  He was in a manual wheelchair, with very limited use of his hands.  He drove to the meeting and spoke with honesty and confidence.  While his was the result of a diving injury (shattered C6), his journey contained elements that resonated with those gathered there.

Rod spoke of the wonderful cocoon of support that surrounded him after the accident and his return after many weeks of rehabilitation.  He was accepted back into his circle of friends.  If anything it was expanded as people came out to join in the project of helping him.

As time went by and others moved on with their lives, the reality of what was lost sunk in as he attempted to make a new life for himself, forced to take a different path from the one he was on before the accident.  At that point a bout of depression set in.  It was some straight truth from his Mother that broke through to the heart of his will to live life to the fullest refusing to be defeated by his uncooperative limbs.

What struck me as I listened to him was that the key to his choosing life was a simple acceptance of himself just as he was.  That acceptance freed him to grow and challenge the limitations.

He shared that often his speaking engagements are with Children and Youth.  Having worked with Youth for almost half of my ministry, I remember just how those I served struggled to find self-acceptance.  Many were terrified of not being accepted by others to whom they gave the power to determine their value.  Most sought to discover exactly what to say and do, what to wear, how to wear their hair, with whom to be seen, so that they would not become the object of derision, or worse yet, simply a cipher.

Rod’s message of finding self-acceptance in the body of a Quadriplegic seems to me to have potential for freeing those who see themselves as unacceptable for any reason.

Mary Ann has had to find a way to accept her value having lost many of the abilities that had provided a sense of worth.  In her case, the Parkinson’s provided the challenge to her self-acceptance.  She seems to have done remarkably well at moving through her days with a certain confidence about who she is.

When I retired, I began a journey toward a new understanding of myself that did not revolve around my profession.  The journey toward self-acceptance is not over.

Each of us as we move from one time to another in our lives, leave behind certain abilities, relationships, untraveled paths.  We all need to find the way to some level of self-acceptance to be free to live.

The courage of a Quadriplegic informs all of us as uncooperative limbs cease to define his worth and value.  He is what he is.  Knowing that, he has become more than he could have imagined.

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.