Finally!  We came home around 3:30pm today.  While the staff at the hospital was wonderful, and Mary Ann had excellent care, the dementia has increased dramatically.  Physically, she is fine.  We are back to normal, riding the margin between heart issues and Autonomic Nnervous System issues (fainting due to sudden drops in blood pressure).  It is not, of course, where we would choose to be if we had a choice, it is just what is so.

From the very first sleepless night, the first night we were there, the decline has been steady.  Last night was terribly difficult.  I put up the rails on the bed so that she would not get up and try to walk by herself on a very slippery, very hard floor.  She just could not accept that the catheter allowed her to stay in bed rather than head to the bathroom.  She saw people and animals and messes here and there.  Today she described in detail a busy cluster of bees on the floor at some time during the night.

I sat beside her on her bed for fifteen minutes to a half hour a number of times during the night.  At one point when she was awake, in the middle of the night, I checked my watch to see how much time there was between the need for me to get up and respond to her or help her.  The time was usually between ninety seconds and two minutes.

I realized that if we were required to stay another night, I would need to arrange for a paid companion so that I could get some sleep.  The constant nighttime needs are more than I can handle and remain rational, patient and helpful, after just two or three nights like last night.

Talking with the doctors helped clarify just how important it was to get back home to a stable routine and familiar setting.  They agreed that the additional tests being considered would not serve any real purpose.

While there were differing opinions by the two doctors and the Physician’s Assistant, two out of three felt that there was no compelling reason to expect more vulnerability to Congestive Heart Failure than there has been since the first bout five years ago.  We are going to return to our pattern of life to the degree the dementia will allow.

Mary Ann decided to go to bed at 5:30pm this evening. She has been up and down a a few times already.  Of course, I won’t know how tonight will go until morning.

I had mentioned in passing to one of the nurses that I appreciated having all the folks at the hospital with the care recognizing that Mary Ann and I would pretty much be on our own to deal with the aftermath when we got home.  I suspect she mentioned it to the Social Worker at the hospital who came in to talk with me before we left.  It is the norm that a Hospital Social Worker will check to see what if any needs there might be when a patient goes home.  This time the questions indicated some extra effort at listening to our situation.

The Social Worker mentioned that the nurses had spoken well of the care being provided Mary Ann.  Since I am no longer in a role that provides opportunity for external validation it was especially meaningful to hear those words of affirmation.  The Social Worker seemed to feel very good about the support system we have, from family and the congregation.  She sees folks who have little or no support as they try to care for a Loved One.

The day tomorrow is a full Wednesday.  It will be interesting to see how Mary Ann does with all that will go on.  I am going to continue our activities based on the assumption that alertness and the ability to track will return and the hallucinations will diminish. It that improvement does not come, we will adapt.  It is what we do.

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The weather was predicted to be spectacular today.  I wanted fresh cider and cider doughnuts from the Louisburg Cider Mill.  The drive is a wonderful one, lots of country scenery.  I warned Mary Ann early today of my plan.  She said okay.  Understand the Cider Mill is an hour and a half from our house.  I had in my mind that it was only an hour.

The plan was realized and we spent three hours on the road for a couple of cider doughnuts and a cup of cider.  We did bring back a dozen apples, a jug of fresh cider and some licorice, one of Mary Ann’s favorites.

Along the way, we got to spend a little time at a family farm tended by Doug and Marikay.  What a beautiful spot, fields, woods, a pond, and a newly built little cottage.

Saturday we had gotten to spend some time with our Son Micah, Daughter-in-Law Rebecca and Granddaughter Chloe, who live about an hour away in the Kansas City area.  We went to church with them and the ate with Micah and Chloe while Becky enjoyed time with a friend.

That quality time was followed by my Sunday morning trip to the Lake for a long walk on a newly discovered pathway, providing sights and sounds, entertaining descriptions posted on periodic stands, along with great weather.  Mary Ann enjoyed time with a Volunteer/Friend, who washed her hair and treated her nails, providing some refreshing personal care.

After a little football, we were treated to some creative and engaging arrangements of choral music and piano music by a talented composter/arranger named John Leavitt.  I had had the joy of getting to know him through an informal interview when the congregation I served was looking for a full time musician.  It was a pleasure to attend the concert/hymn sing at a local parish.  John has a remarkable ability to take something that could sound trite and tiresome from so much use and make it new and fresh.

The scary moment came just before we were to head out the door and leave for the cider mill.  We were returning from the pre-trip bathroom visit.  She had shifted into one of her eyes-closed modes as I walked her into the living room.  She was not moving well, so I asked her to stand still for a moment while I went the six feet or so to get the transfer chair and pull it beside her.

I saw it happening, but I couldn’t reach her to stop it.  The scene moved almost in slow motion as she move out of balance toward the end table, shifted direction, guided by the front of the couch and her head slammed against the back of an old wooden mission rocker as she cumpled to the floor.

For a moment, I thought this was the dreaded fall that would take her to the hospital, maybe producing a more damaging stroke than the last one.  I was sure, at the very least there would be bleeding that could not be stopped due to the regimen of Plavix and Aspirin.

I held her head and felt the knot.  There was no bleeding.  As I held her, I asked if it hurt terribly.  I was most interested in hearing if she could respond coherently.  To give her the words with which to respond, I asked the usual, “on a scale of one to ten” question.  At that point she said it was a nine.

I was just glad to hear her respond.  I held her for a while, then asked if she wanted a pillow so that she could rest on the floor before getting up.  She said she did.  While the norm would be to try to have a person stay awake after a head trauma, she was talking very coherently.  She had already, before she fell, switched into tired mode — usually followed by a nap.  I had asked her then if she wanted to nap, but she still wanted to go.  Now, as she lay on the floor, I thought she would need to rest for a while.  Already before she started her nap, she said that her head did not hurt any more.

The usual pattern is for her to sleep two hours when need for a nap hits.  This time she rested for less than an hour.  When I got her up from the floor, she decided that she still wanted to go.  That is when we left for the cider mill.

I have said it before.  I will say it again.  This woman is made of iron!  Twenty-two years of Parkinson’s, multiple heart attacks with two of the three main arteries on her heart completely blocked, a life-threatening bout of pneumonia, a stroke, the onset of Parkinson’s Disease Dementia (a Dementia with Lewy Bodies), flirting with stage 4 (of 5) Chronic Kidney disease, leaking heart valves, Pulmonary Hypertension, too many falls to count, and off we go on a three hour trip to the Cider Mill for a cup of cider and some cider doughnuts.

She will probably outlast me and end up dancing on my grave.  Yes, she still dances.

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Danger! Danger!  Alien attacks again.  This Alien presence from planet Pedometer Prime has had his way with me again.  I was out and walking some time before 7:30am.  I had no idea there was a 7am on Monday.  I didn’t think they started measuring time until at least 9am.

The Alien and Mary Ann were in collusion.  As suspected, sleep did not go quite as well last night after a daytime nap yesterday and earlier to bed than usual.  The consequence was that she woke up at 6:45am in need of food and ready to get up.  Do you see how this played into the Alien’s hands?  After eating a single serving snack of apple sauce, she was willing to lie down again while I went out to walk for twenty minutes or so.  It seemed best not to start meds too early, since the two hour increments of medicine would end to early in the afternoon.  I put the Lifeline pendant around her neck, got water for her, the television remote for the bedroom TV and headed out.

Now, of course, I am feeling energized and positive.  You see how this Alien presence weaves his subversive plot?  Here I am writing this post and, again, it is morning — Monday morning!  I guess to be honest for those of us who are retired, there isn’t a Monday.  In fact we bought a clock from Radio Shack that shows the day of the week so that we would know what day we are in.

As I thought about Mary Ann’s increased ability to walk and the better nights, the domino effect popped into my mind.  The better nights have encouraged a change in my pattern of activity.  It seems more possible to do an exercise walk.  I am more rested and, as a result, more willing to get up in the morning to get in the walk. The walk perks up my metabolism, providing the stamina to write the post earlier in the day.

In addition, by getting up earlier, I am more ready and able to get to bed earlier.  Since I am writing the post earlier in the day, I can use the time in the evening after Mary Ann goes to bed for listening to music, or engaging in a Taizé devotion, following a reading by Fr. Ed Hayes.  The latest readings have come from his book, Prayers for a Planetary Pilgrim.

All of the above has been about me, the Caregiver.  For Mary Ann, the good news is that she has seen little of Grumpy Caregiver and more of the patient and helpful Caregiver.  My confidence in her ability to walk has freed her from my constant presence, in her face, asking her to sit back down.  She has fallen on occasion, but still not often by comparison to the past. My confidence in her ability to walk has given me the feeling of being untethered.  That has felt  remarkably freeing.

It fascinates me just how interrelated all these circumstances are.  One domino falls, touches the next.  That one hits another, that one bumps one more.  Sometimes one small change can grow into something far more substantial.

I have no illusions.  Just as the dominoes can fall for good, they can fall for bad.  The hallucinations have begun to return.  Yesterday morning, there was a Raccoon in her bed.  When we drove into the garage after church last evening, Mary Ann in a matter of fact tone, noted that they hadn’t thrown away the quills.  I asked to what she was referring.  She answered, the Porcupine quills.  She saw them distinctly.  When I got out of the car, turned on the lights in the garage and helped her out of the car, she saw that they were gone.  She was, however sure there were some in the house.  When we got in, she went into the bedroom and looked around.  She didn’t comment further on the matter. Hallucinations, of course, can interfere with her sleep and keep her up for hours.

Since she got up early this morning, she may get tired and need a nap.  A nap might impact her ability to sleep.  The domino effect could take us back to more troublesome times.

To try to avoid that path, we have made a commitment to pick up a friend, head out for lunch and a ride.  My hope is that we can keep active until Oprah.  Once that time comes, she generally stays awake until bedtime.

We live on a very narrow margin of functionality.  We can do very well one hour or day or week, and very badly just as easily.  Right now we are on a side of that margin that has been very enjoyable.  Here is hoping for more time on this side!

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The Alien from Pedometer Prime chooses bribery to seek a permanent home!  Will he succeed?

[If you have not read yesterday’s post, what I just wrote will make no sense.]

This was a very cold and gray morning.  A blustery breeze from the north made it feel even colder when out walking.  Since there was a Volunteer this morning, I was able to go out to the lake where I usually sit in the car, read, listen to music and watch for birds and any other wildlife that may appear.

My regular routine includes moving to the Delaware Marsh below the dam to take a short walk with binoculars handy.  Today, the Alien overpowered my resolve to expend as little energy as possible and set me off at a brisk pace for a long walk around the marsh.

It is an insidious plot.  I started walking feeling as gray as the day, shuddering at every gust of the cold wind and rattle of the leaves on the Cottonwood trees.  The cold kept me walking as fast as I could on the rough ground.  Occasionally I heard or saw evidence of a few birds, but most of them had the sense to stay sheltered from the cold.

As I walked the Alien began to tempt me to let him stay in his new home.  I began to warm as the Alien slowly turned up the thermostat on my body’s furnace.  I walked past the spot my short walks had taken me in the past.  I discovered markers for a path that took me into new areas of trees and fields, marshland and ponds.  The cold air changed from an irritation to be endured to a fresh and inviting Siren.

Even the gray sky ceased to be a depressing presence and became a calming backdrop for trees and weeds and wildflowers.  The Alien was enticing me to embrace his presence rather than send him back to Pedometer Prime.  I made full circle around the Marsh, having had no idea prior to this morning that there was a path all the way around it.  I came around the last turn to an information sign posted on a stand that said I had just walked two miles! That evil and subversive Alien!!!

At the lake I had watched many thousands of gulls resting on the water and flying through the air.  On the drive back across the dam I passed one hawk sitting on a post almost within reach as I went by.   I spotted another hawk and stopped the car on the dam to watch it as it remained absolutely stationary in mid-air, only occasionally moving it wings to reposition itself against the breeze.  I watched that seemingly impossible aerial display for many minutes.  As I left the dam area and traveled a road among the trees to get back to the highway, a couple of deer with very dark coats of hair were standing on either side of the road.

When I arrived back home, there was a hot meal waiting.  As often happens on a Sunday morning (we attend the evening worship service), a Volunteer had come to stay with Mary Ann.  As always, Edie brought with her the fixings for a full, nourishing and tasty meal; she prepared it and set it out on the table for us. There is enough to allow at least one more meal.  No cooking tomorrow!

Now to the title of this post.  I just could not keep Mary Ann awake any longer.  It was tough to keep her up yesterday, but we just kept going, a trip to Sam’s Club at midday, a noon meal (thanks, Lisa, for the pizza muffins), a trip to the regular grocery store, and supper (steak and twice baked potatoes from Omaha Steaks — I hate cleaning the George Foreman grill).

Now with both of us sated after a hot meal, with football on the television, I simply could not convince her to stay out in the living room in her chair.  She is more of a professional football fan than am I.   The Kansas City Chiefs were playing (they just lost in overtime — no surprise they lost, just that they managed to take it to overtime).  The only team that would capture her interest more would be Da Bears.  I cajoled and encouraged, but she was clearly wiped out.  She is still in recuperation mode from the long trip from which we returned a couple of days ago.

The question remains: Will she sleep tonight?  After ten good nights in a row, none following a daytime nap, tonight seems likely to break the string.  There has not been a clear pattern correlating naps and restless nights, but common sense suggests there must be some correlation.  Here is hoping that in this case common sense does not prevail.

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Last night was pretty tough — up and down all night long, then up this morning at 6:45am.  The same is happening as I write this and has been going on for two or three hours.  There is no point in my trying to head in to bed yet since the activity is constant at the moment.  She has been climbing in and out of bed for no apparent reason with only minutes in between. 

While, again, it is a function of the disease, it is no less frustrating.  The time that I have generally claimed as my own in these late hours after Mary Ann goes to bed is coming to no longer be my time.  Tonight I set upon having some spiritual renewal time.  There is a podcast of  the Saturday worship service at the Taize Community in France.  The music is the sort that draws the participant in with a beautiful simplicity.  The readings are done in at least three, often more, languages.   There is a calm and peace that seems to include in community people like me, listening from thousands of miles away. 

I had first read a weekly poetic devotion by Fr. Ed Hayes, whose writings have had much impact on my personal Spiritual journey.  The reading suggested lighting a candle.  I haven’t done it in a very long time, but I pulled out a votive candle, placed in on the worship center, a cabinet built precisely for that purpose, with stained glass inserts in the doors.  I lighted another candle in a tall walnut candle stand made by my Dad, many decades ago.  Next to that candle stands the Shepherd’s Staff made by a parishioner and given to me at my retirement, a symbol of my forty years of ministry. 

A small iron Celtic Cross stands on the cabinet next to the votive candle.  Joining the Cross and candle on the worship center is a large ceramic bowl with lettering and symbols painted on by the other Staff members and again, given at my retirement.  The words are the summary of the congregation’s sense of purpose, “Grow in Faith.  Share Christ’s Love.”  The bowl is a symbol of Baptism, in our tradition, understood to be that first encounter with the Grace of God, an act of unconditional love by God, initiating relationship. 

One other item on that worship center is a simple memento of a long-standing friendship with a small group of parishioners from the first parish  I served as pastor.  It is a small beveled glass case with found items, pine cones, dried weeds, parts of plants, stones picked up on a trip together to Alaska many years ago.

With the candles and the light from the computer screen only,  I began the Taize worship.  As I settled in enjoying the sensations that come with such an experience, the monitor screen that keeps me aware of what Mary Ann is doing as I sit here, revealed the activity.  Since she is at risk of falling when she gets up, needs help to use the commode, to manage the cup of ice water next to her bed, to turn over in bed, her activity demands my participation. 

I have stopped and started the worship a number of times, getting more frustrated each time, resenting the loss of the freedom to enjoy the experience.  There is a odd sort of irony, that the very thing that helps me maintain a healthy equilibrium in caring for Mary Ann, is doing the opposite tonight. 

As the Neurologist allowed, I have just this evening increased the dosage of Seroquel, which is the medicine that both reduces the hallucinations and helps with sleep.  The last increase was not enough.  It is too soon to assess the effectiveness of this increase.  Certainly, the hallucinations have not decreased yet, they continue to be on the increase.  Just moments ago she told me to be careful of the little girl when I was adjusting her sheet.  This morning when she first got to the table for pills and breakfast, as soon as I turned on the light, she tried to show me the blood on her hands.  I think she believed it to be from the raccoons or whatever biting her.  There was, of course, no blood. 

Last night’s post mentioned my need for better choices in the area of diet and exercise for the sake of this Caregiver staying healthy.  Last night, today and tonight have revealed again the difficulty of following through with such plans.  When there are nights like these that string together, it is just survival mode.   A steady pattern of changed behavior seems completely out of reach.   I am still reading the book offering helps for improving the diet part of the problem.  Maybe some changes can be folded into our days. 

As Scarlett would say, “I’ll think about that tomorrow.”

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This one is a veritable Life Boat, not just a Life Preserver.  Thursday morning (day after tomorrow) I will get in the car and drive a little over five hours on the Interstate through the Flint Hills and on into Oklahoma to St. Francis of the Woods Spiritual Renewal Center.  I will stay over two nights and return Saturday afternoon.

What about Mary Ann???  Mary Ann will have a great time while I am gone.  She will have our Daughter, Lisa, all to herself for that entire time.  Hopefully. our Son, Micah, and family will be able to join the party at some point.  Lisa is flying in from Kentucky as a gift to both Mary Ann and me, so that we can have a break from one another.  Admittedly, 24/7 does wear on both of us. Our Son-in-Law, Denis, will be serving as both Dad and Mom to the girls for the time Lisa is gone.

I have described St. Francis of the Woods in earlier posts.  Lisa provided the opportunity to go some months ago.  While I am at St. Francis, I will walk for hours, read, meditate, all among beautiful wooded paths and open fields.  The Renewal Center includes a 500 acre working farm.  There are only three cottages in the part of the property on which I will be staying.  The cottages are not in sight of one another, so it is not unusual to see no one for hours.

Maybe my love of solitude is the result of being the youngest of five children by so many years that I was raised almost as an only child.  I spent much of my childhood outdoors by myself.  I loved it.  I don’t really remember ever feeling lonely when I was outdoors in a natural setting.

I will take with me a very small three-legged stool strapped to my backpack so that I can stop to sit and read.  I will read some Scripture, a book on Spiritual Formation, and a book titled Quantum Physics and Theology, written by a Theoretical Physicist who later in life became an Anglican Priest.  I will carry my binoculars and look for birds and other wildlife.  I will watch the sunset from a wonderful spot on a hill that provides a panorama to the west stretching for miles.

I will probably sleep for many hours.  At this point, it is quite an unusual experience to have uninterrupted sleep.  I have checked the weather forecast for Coyle, Oklahoma (the nearest town — very small).  The weather is predicted to be partly cloudy, in the low to mid 70’s during the day and the upper 50’s at night.  That would be hard to beat.

One treat that may or may not materialize is a visit with a very good friend who was a member of the congregation I served in the Oklahama City area.  As a physician attached to a University Hospital, his schedule might not allow us time to talk.  I ministered to him and his family as his wife battled terminal Cancer.  Actually, we ministered to one another as we dealt with the Parkinson’s at the same time.  We spent hours at Ingrid’s Deli early in the morning a couple of times a week processing our experiences.  We haven’t seen each other in over thirteen years.

Since there will be no computer access at St. Francis, there will be a few days break in the postings here.  The only electronics at the cottage will be the portable CD player I am taking along.  By the way, there is a fully equipped kitchen including a microwave and, gratefully, a coffee pot.  I will bring some of those frozen leftovers from the freezer.  Cereal, fruit and granola bars will fill out the meals.

As I have continued this series on a Caregiver’s Life Preservers, I am wondering what Mary Ann would consider to be her Life Preservers.  I am not sure our current capacity for communication will provide the answer to that wondering, but I may just ask anyway.

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When Mary Ann got up from her chair once this afternoon, as usual, I got up from my chair to ask where she was going so that I could help her if needed.  She came the few steps toward me, placed her hands appropriately and began to dance.  This will be no surprise to those who know me well, but even after 22 years of Parkinson’s Disease, several heart attacks and blocked arteries, a stroke, a life-threatening bout with pneumonia, and now a couple of years into Parkinson’s Disease Dementia, she can still dance better than I can.  I stood and swayed a little, while she actually danced.  This is certainly a confusing little world in which the two of us are living.

The last couple of days have been better than the one I recounted in my last post.  Yesterday, Volunteer Edie came in the morning while I headed up to the lake to read, listen to music and watch the wildlife.  As always, Edie made a full and tasty meal for us, so Mary Ann actually ate well.

The meal I had prepared the night before did not thrill Mary Ann (pork chops, stir fried fresh veggies from parishioners’ gardens, and Uncle Ben’s butter and herb rice cooked in chicken broth).  That Saturday was pretty much a bust from beginning to end.

Sunday not only included the good meal that Edie had prepared, but there were football games.  Mary Ann is the more enthusiastic football fan in the house.  Both the Chiefs and the Bears lost, so she was not as pleased as she would have been had either or both won.

Today was a pretty normal day.  Zandra came to give her a shower.  That happens Mondays and Wednesdays.  We got out to the library, which she loves.  The library happens to be near G’s frozen yogurt, so there was the obligatory stop there.

A Volunteer, Jolene, came to spend time with Mary Ann after supper while I headed up to the spot with the view about ten minutes from our house.  I took with me a number of CD’s that I had picked up at the library.   After listening to one of the Celtic CD’s, I put in a CD of Taizé music.  Taizé is a community in France to which young people in particular come to be spiritually renewed.  I haven’t been there, so I can’t really describe what it is like other than what I have heard and read.  The Taizé community is known worldwide for their worship life and liturgical music.  The music is simple, with refrains that are repeated many times, often sung in harmony by whoever has gathered for worship.  Taizé music is in many languages.  It seems to be a place at which national boundaries cease to divide.

The music felt like a life preserver to me this evening.  It is my hope that I will find accessible Taizé resources to add some more disciplined regular times of spiritual refreshment in my days.  I suspect it might help raise the quality of care for Mary Ann and the quality of life for both of us.

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.

The power of music to calm, to stir, to break through defenses is a wonder to behold.  An hour each of the last two evenings sitting in front of the audio system listening to music after Mary Ann has gone to bed has been time very well spent. 

For me, almost immediately when the music begins, it is as if all the frustrations and harsh realities of the day no longer exist.  Mind you, it has to be what is in my estimation, good music.  If it is trite, or shallow, or poorly performed, I simply have to turn it off and put in another CD.  Of course music is a matter of taste.  What grabs one person might repel another. 

I generally cannot use music as a background to doing other things.  Maybe it is the structure of my brain in particular, but I pretty much need to do one thing at a time.  I either read or listen to music, very seldom do I try to do both at the same time.  When I used to walk neighborhood streets for exercise, I could listen to a CD as I walked.  If I am out in the woods walking, I listen to what is around me.  I am not interested in blocking that out with music. 

Since we are homebound so much of the time and the television is going almost constantly, having an hour just for music is a luxury.   While I usually become engaged in what is going on in the music and immerse myself in it, there is often a journey on which it takes me.  That journey takes me through my defenses, on past the frustrations of the day, into layers of being that are closer to the core of who I am.  Not always, but often, I begin reflecting on very basic issues. 

The place to which the music often takes me is a place where I can wander around in my mind and heart, looking pretty directly into my failures and weaknesses, feeling the pain.  It is not scary or depressing, just real.  There in that core of who I am lives the Grace of God.  It is surrounded in that Grace that I am able to peal away the layers behind which I hide, even from myself.  When finally the journey has taken me through the last layer, there I find a sense of security and safety. 

Don’t misunderstand.  This is not always pleasant.  The place to which I go is not always a happy place.   Often the worst of what lives in me is exposed.  I certainly don’t always like what I see.  It is just that whatever it is does not have the last word on who and what I am.  The spark of life given to me with every breath comes from a Someone who wants me to be — whoever or whatever I am.   I have to say that more often than not, no matter what I have seen on the journey, I find it exhilirating and refreshing.  Maybe in a sense it is a way to reboot my mind and heart. 

All of us are coded differently and find renewal in different ways.  Our life preservers vary.  What is common to all who are full time Caregivers is the need for life preservers to hang on to regularly so that we don’t drown in our challenges and frustrations. 

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 was 4am before Mary Ann finally went to sleep last night.  The hallucinations were vivid and constant.  The family of people and the raccoons were present much of the time, one or the other.  On two occasions I asked her whom she was talking to.  Once her answer was the raccoon; the other time it was the little girl (blue-eyed).  Today in what sounded like a lucid moment, she asked me if I was ever going to tell her about that family.  Needless to say, all I could do was respond that she would have to tell me about them, since she was the only one who could see them.

I have been going to bed early (for me) the last three nights in hopes that my presence in the bedroom might reassure her and allow her to settle.  She was restless all three nights for much of the night.  Last night it was constant until that 4am time.  She was up and moving and talking and shuffling around.  At one point, I turned on the bright overhead light with four 60watt bulbs and left it on for an hour or two in hopes that the hallucinations would be diminished by the visibility.  It did not work.  The light just made it harder to sleep.

What is an odd dimension to this time is that at least three people who have spent time with or talked with Mary Ann in the last few days have commented on how lucid and communicative she has been, more so than usual.  It makes no sense!  She is wasted, but more lucid at times.  When we are alone she is often so tired that she can hardly hold her head up, she often struggles to track interactions at all.

What makes this a little easier to deal with is the fact that what we are experiencing is not different from what many in the online spouses of those with Lewy Body Dementia.  Others in that group share often that their Loved Ones see and talk with people who are not there.  The group members refer to the lucidity with others as “showtime.”  Many of those Caregivers have to deal with others only seeing their Loved Ones when they seem very lucid.

One of my Brothers phoned to tell us of a tragic death in the extended family.  Mary Ann took the call.  She was apparently very communicative.  After the call she shared what had happened with the Volunteer.  When I returned home she shared with me what had happened.  I phoned my Brother and discovered that the death was of a different family member.  That sort of misunderstanding can certainly happen.  That kind of confusion in tracking what has been said is not unusual any longer.  When a good friend had told both of us about her daughter being pregnant, Mary Ann was convinced that her young Granddaughter was the one who had become pregnant.

What is, of course, a consequence of the sleeples nights is that not only do Mary Ann’s hallucinations get worse, but my stamina wanes and we shift from creating a good quality of life to survival mode, just getting by.  Today was a busy day, Mary Ann’s morning Bible Study had the first meeting for the fall, we had appointments for haircuts for both of us, we had an appointment at the cemetary, and a Volunteer came for the evening.  She did manage to get a couple of hours of sleep in before supper.  On the monitor, she appears to be restless again.  I am not sure I am up to another sleepless night.

The last couple of evenings Volunteers have been with Mary Ann so that I could head up to the spot with the view.  There were a number of deer to be seen, including a buck with a six or more point rack.  There were lots of bats and a few nighthawks.  I enjoy watching them.  I did a little reading — hard to do when sleep deprived (thank goodness for caffeine), and I listened to some music.

For a week Mary Ann has been taking a slightly larger dose of Seroquel which is supposed to control the hallucinations and help her sleep.  So far, the opposite has been so.  I will give it another few days, and if there is no improvement, I will increase the dosage by another increment suggested as an option by her Neurologist.  If that doesn’t work, I will fax the details of her status to the Neurologist with a request for other options that might have a chance of improving our quality of life.

As I mentioned in an email to my Brother, life is not for sissies!

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