This was one of the difficult days in the cycle we are in.  As much as I want her to be present with me, I was grateful when she took a couple of naps.  I don’t really know how to explain how difficult it is when Mary Ann is weaving hallucinations/delusions/dreams with moments that seem lucid, at least on the surface.

This mode demands full and constant attention.  Since she can’t differentiate what is real from what is not real, I am expected to deal with things that are not there.  Every task demanding my participation is multiplied exponentially in difficulty.

Of course she started trying to get up between 5am and 6am.  Then she was in the intense sort of mode that has a bit of an adversarial tone.  On days like today, she may be mobile on her own one minute and then weak and confused with her eyes shut the next moment.  When she is in that mode she often can’t connect with the simplest things.  If I ask her to sit down to put her pants on, she may stand up.  She may think we are in the bathroom when we are in the bedroom.

Eating is a nightmare.  When she will allow me to help, she often moves her hands in the way of the food as if she has food in her hands, or put her head down in a way that won’t allow me to put the food in.  She tried to drink the chips from the little pyrex dish, then she tried using a fork on the chips.

In this mode she will often not answer a question or say a word that doesn’t fit, then get angry with me for asking her again.  Sometimes she will say no to a food, but eat it when I put it to her mouth.

It is almost impossible to find out what she wants or where she wants to be.  At one point, she wanted to write a thank you note to a fiance’ from fifty years ago whom she decided had come by to visit.  Another time she just said she wanted her chip autographed.  I said back to her those words, and she confirmed that is what she said.  I, of course, have no idea what that was about.

It was a difficult day also because I find it physically very taxing to lift, move, twist her into the transfer chair or the chair at table when her eyes are closed and she has no spatial awareness to help.  Constantly getting her into and out of bed, turning her from facing one side to facing the other, demands physical strength that is right at my limit.  So much of the time in days like today, she is minimally helpful in that moving.

I tried to nap this morning during her first nap, but it was a restless one for her, so I needed to be up, helping.  Very soon she was up again.  Finally, this afternoon, I was able to rest in bed for about an hour while she was napping more soundly.

She has been incontinent in bowel activity and having bouts of mild diarrhea.  The tasks that are associated with that problem have been increasing and were included in today’s struggles.

I am disappointed in myself that it takes so little time when she is in this sort of mode for me to feel as if I am at the limit of my capacity to cope.  It would seem as if I should recoup when she has the sleeping days or a good day, and then be able to keep things in perspective, dealing with great patience on the bad days.

What seems to happen instead is that as soon as there are even signs that one of these especially frustrating times is coming, the dread emerges.  When the day comes, of course, it is after a challenging night.  With the difficult day comes the awareness that this is what is likely to be the norm more and more as the days and weeks and months and years go by.  As much of a struggle as today has been, it is only a taste of what is likely to be in store, judging from the experience of others.

I understand that the difficulties today are just for today.  Tomorrow may be better or worse, but that will be for tomorrow.  Were I perfectly rational and dispassionate, I would be able to take each moment as it comes without feeling the weight of past struggles and ones yet to come.  I am not perfectly rational and dispassionate.  I am alive, able to feel the frustration and helplessness and sadness to the core of my being.  With that comes the capacity to experience the full range of what it means to be alive, feelings of joy and exhilaration.  I guess the trick is to retain the capacity to experience fully the extremes that come with truly being alive without getting lost in one or the other.

Mary Ann’s friend, Jeanne, phoned today and will come tomorrow for part of the day to be with Mary Ann.  She came a few days ago to spend time with Mary Ann while I met with a friend, but Mary Ann slept the entire time Jeanne was here. Tomorrow’s visit will give me a chance to get the van serviced.  I was having difficulty figuring out how to get that work done given Mary Ann’s current condition.

Needless to say I am hoping for a better night and a better day tomorrow.  I can hope.

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“How long do you intend to keep caring for Mary Ann at home?” he asked.  “Until I can’t handle it any more.” I answered.  Then the hardest of all, “How will you know when that time has come?”

Since we live in a world of denial that provides us the emotional and psychic room to live each day without constant dread, those questions are not often asked and answered.  First of all, I don’t know the answer.  I have intentions about how I intend for this story to end, but I have no answers to questions about how the future will actually play out.

Two days ago I was asked those questions with which I began this post.  Today I experienced to some degree elements of the answer I gave.  As I have said in earlier posts, my intention is for the two of us to stay together here at the house at least until one of us dies.  My intention is to use as many resources as I can locate and afford to help make that possible.  That intention is not just an intellectual decision about how I intend to proceed.  That intention lives in insides.

With that said, I had to answer the question rationally.  I intend for Mary Ann and me to be together here at the house until I can’t handle it any more.  The question that has to be addressed, the hard question is, how will I know when I can’t handle it any more.  I stumbled around some as I tried to answer that hard question.  The two things that came to mind are hallucinations that get out of hand and grow into a steady stream, and the inability to get any sleep.  The two are related.

Today was an example of those two problems converging.  Last night Mary Ann was up multiple times, as many as a half dozen in an hour.  Almost every one of those times, there were people, or raccoons or other visual images not actually present outside of her mind.  The lack of sleep during the night meant that the hallucinations came in a constant stream this morning when she got up.  She asked if we were the only ones in the house, implying that she thought we were not the only ones.

By the way, yesterday, as she was eating the last piece of strawberry-rhubarb pie with ice cream (pie she had eaten with great enthusiasm for the two days before), she decided that the filling in this last piece of pie had somehow changed into tomato sauce. She ate the ice cream, but left most of the huge piece of pie. I am afraid of the day when I can’t get her to eat enough food because of what her mind is seeing.

Today, she grabbed the bedspread as I was folding it at the foot of the bed preparing for her nap.  She said there was a sheet of stamps or stickers stuck to it.  The bedspread was right in front of our eyes, she had her hand on it, convinced that she was pulling off what was stuck on it.  She told me to turn on the bright lights on the ceiling fan over the bed so that I could see the sheet of stamps.  When the light went on, she reluctantly admitted that they were not there. On the way to the bedroom tonight, she stopped and told me to get rid of “that” and then stepped over something that was not there on the floor in front of her.

This morning, when the hallucinations were at their steadiest, Mary Ann simply could not sit down for more than a minute or some fraction thereof.  She would jump up to go to one spot or another to get a good look at or pick up whatever it was she saw.  I had to jump up every minute or fraction thereof to grab hold of her gait belt so that she did not fall.  Once she was so dyskinetic when she jumped up that it was all I could do to untangle her feet and help her sit back down before she fell into a couple of tables next to her.  The activity was so steady that I could do nothing but follow her from one hallucination to another, or one task she had in her mind to do, pretty much always losing track of whatever it was by the time we got wherever she was leading me.

If hallucinations came at that pace constantly, I would soon be completely unable to cope.  The lack of sleep impacts both of us.  The less she sleeps at night, the more she hallucinates, the stronger and more vivid and more frequent they become.  The less she sleeps, the less I sleep.  The less I sleep, the less able I am to cope with the hallucinations.  They compound one another, lack of sleep and hallucinations, and my capacity to cope.

Here is how my inability to cope expressed itself this morning.  I told Mary Ann that I had been asked about how long I could keep her at home.  I told her that my answer included two things that could make it impossible, lack of sleep and streaming hallucinations like the ones that we were dealing with this morning.  It was cruel to say that to her.  I have no excuse.  My frustrating inability to cope with the constant following her to one thing and then another, after having a very poor excuse for a night’s sleep was the context, but I chose to say those harsh words. She has Parkinson’s Disease Dementia!  She didn’t choose the disease!  She didn’t choose the hallucinations!  She didn’t choose the frustrating behavior!

I guess there was a part of me that hoped the words would get through to the healthy part of her mind that has some ability to control her actions.  What she said next, broke my heart.  “Then what would happen to me?”  Usually, whatever I say just bounces off with no reaction.  This time it broke through.

I need say just how hard it was to actually write for all to see those last paragraphs revealing what I said to her.  I am ashamed and embarrassed.  I can only hope that someone reading this post has been there and said things of which you are not proud also.  I have chosen to face my own flaws head on without pretense, since it is just too hard to pretend to be someone I am not. My hope is that facing the flaws head on, will allow me to grow into someone better able to cope, a better Caregiver.

In answer to Mary Ann’s question about what would happen to her, I immediately told her of my intention for us to stay here together until one of us dies.  I told her I would use paid help here at the house to help do the care when I could not handle it by myself.  I told her that if I die first the kids would take care of her, keeping her close to them.

All I wanted to do was to get her to stop hopping up, responding to the various things she saw. She did stop hopping up, and I was able to get my shower done, make the beds, write an email or two and finish getting her ready for the Public Health Nurse’s visit.  I don’t know if what I said had any impact in that change in behavior, but even if it did, I feel no less guilty about being so harsh.

It is at times like this that I am very grateful to have a God who has openly addressed our flaws and stolen from them the power to ward off the Lord’s love of us.  That is why the song is called “Amazing Grace.”  The power of that gracious love is transformational.  It frees us to face our failures.  At the same time it challenges us to grow and change, cradled in the arms of that love.

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.

Maybe it’s Lori’s Chocolate Chip cookies (see yesterday’s post) doing their anti-depressant wonders.  Maybe it is having an almost normal (for us) night’s sleep.  Maybe it is reading yesterday’s post in the morning — late in the evening it is easy to become pensive and full of self-pity.  Maybe it is the dramatic contrast of all that we in our household have compared to the pain and suffering of tens of thousands in Haiti in the aftermath of the earthquake.  Maybe it is just getting tired of hearing myself whine.

Whatever it is, I need clarify for myself and any who follow this blog, that what I am feeling in regard to my change of circumstances from Senior Pastor of a large, thriving congregation to the full time primary Caregiver of my wife Mary Ann is just experiencing to the full the dynamics that come along with any major change in life.  There is a letting go of the past and settling in to a new set of present circumstances.

What I am experiencing in letting go of the past has nothing to do with the congregation from which I retired.  In fact, if anything, the wonderfully nurturing and loving people, the caring and competent Staff that actually served as my primary support group during the very toughest time trying to work full time and care for Mary Ann, the generosity of the Leadership of the congregation, the Volunteers (as many as 65 of them at one time) who stayed with Mary Ann all the time I was working away from the house (sometimes staying with her when I needed time to work at home), the Volunteers who have continued to stay with Mary Ann at times for a year and a half now since I retired from being their Pastor, the huge cadre of people there who threw the most fantastic party imaginable when I retired, all of that kindness just dramatizes the contrast between that part of my life and this part of my life.

Would it have been easier if they had all been mean and ugly to me?  I suppose in one sense it might have made me want to get out of there.  I have often reminded people who were hurting after the loss of a loved one, missing them so much, that their pain is a sign of the depth of their love for the one they have lost.  In that sense, I am grateful for every moment of gut-grieving.  It validates the value of the years of service in the church.  It reveals the depth of love for so many over the decades.  It is one way my gut reminds me that those years were good years.

Then, there is the truth of the matter.  No one asked me to retire.  There was plenty of reason as I struggled to do justice to the ministry and give Mary Ann the care she needed, for the leadership to say to me, “Don’t you think it is time for you to retire?” Instead, they said, “What can we do to help?”  I am the one who chose to retire.  It was without a shred of doubt exactly the right thing to do for me, for Mary Ann, for the Congregation and for the Lord who granted me an easy and certain decision-making process.

My struggles now are just the living out of that decision, the living through of the transition from one career to another, one identity to another.  What the whining in these posts reveals is the ugly underbelly of a very ordinary, flawed, self-absorbed, sinful (the Biblical word for such things) somebody going through that transition.  On the positive side of it, I am convinced that the journey will be completed more quickly and completely by allowing the ugliness to emerge without sugar-coating it — naming it for what it is.  That way it is less likely to sneak up later and cause some unpleasant and unexpected consequences — at least that is the hope.

I have always marveled at the enormous power and generosity of God to be able to and to choose to use people like me to actually do stuff to accomplish God’s goals on this clump of dirt on which we all live.  As those of us in the business know and will (hopefully) admit, most of what God does is not so much done through us as it is in spite of us.

Mind you the recognition of what I have been doing recently in these posts, and my own charge to “get over it” does not carry with it a promise that I will no longer whine and complain.  Why on earth do you think I am writing this blog!  It is so that I will have a place to whine and complain.  What I do hope and pray is that what I am experiencing and my reflections on it, the processing of the feelings will provide some bit of comfort to others who sometimes think they are going crazy, can’t go on any longer, are the only ones feeling that way, aren’t as good and nice as they should be, are failing to meet their own expectations.

What I hope is that other Caregivers who read this will understand that they have a harder job than anyone who hasn’ t done it realizes, that what they are doing has as much value as anything anyone has ever done no matter how important it might seem in the public forum, and that their lives have a depth of meaning they might never have found without the privilege of caring for another human being who needs them and whom they love deeply.

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.

I am not completely sure why.  Some things are harder to accept than others.  There is one visual cue that removes all my ability to keep things in perspective.  It takes me right up to the edge of my ability to cope, and then pushes me over.

There she was, half way across the bathroom, walking with her pants around her ankles.  I had stepped out for only moments to give her some privacy.  On the way out, I asked her to please remember to push the button when she was done and reminded her not to get up until I arrived to help her get up.  She did neither.

That visual cue seems to release my deepest fears that the next fall will be the last one.  It surfaces every feeling of frustration that comes when her choices seem to fight against the very help I am trying to provide.  That visual cue pushes me over the outer edge the confidence that I can care for her here at the house until the end.

I got her dressed, put her on the bed, and had to leave the room for five or ten minutes to gather my composure and try to regain perspective. I wonder if part of my reaction is a safety valve blowing off steam to keep the boiler from exploding.  I wonder if it isn’t a grieving process going on that I ignore until something like that visual cue shatters my illusion of control.  I wonder if part of it is my refusal to admit to myself just how hard this is.

Yesterday morning when I went outside to clear the drive and sidewalk of snow for the Volunteer, she tried to get up from her chair, fell and took with her the table in front of her, knocked the computer monitor to the floor along with a cup with some juice in it and a number of other things on the two tables around her.  She was lying in a heap among all of it. Gratefully, as always, she was not hurt at all.  I was upset that I couldn’t so much as go outside to shovel the sidewalk without her getting up, creating the vulnerability for a fall.  Then I felt responsible.  While she couldn’t remember why she got up, I had not gotten her a new box of Kleenex, I had not gotten her fresh water, I had not taken the audio receiver with me outside so that I could hear the electronic doorbell, which she would not have pushed anyway.  I realized again how hard it is to anticipate every impulse need and provide for it so that there will be no need to get up.  It is hard to anticipate and cover every impulse need of another person — one who cannot tell you those needs in words.

She has been having a difficult time keeping things clear the last couple of days.  There are flashes of lucidity, but most of the time, it the hallucinations have continued, verbal communication has been virtually gone, and there have been times of great confusion.  At supper tonight, after working on the baked potato on her plate for a long time, mostly with her fingers, I asked if she saw the meat.  She said no.  A large piece of meatloaf was there on the plate right next to the potato she had been working on. She has often been in eyes closed mode.  She will be acting in every other respect as if she is doing things normally, except that her eyes are slammed shut tightly.  Often when that happens and I ask her to open her eyes, she will answer that she can’t.  I have learned how to walk her from one place to another when her eyes won’t open.

I just came back from the bedroom.  Mary Ann had gotten up on the side of the bed.  She was trying to pick up needles that were not there.  As we were sitting there, a couple of times she told someone to stop pulling on the quilt hanging on the wall a few feet away.  She asked we how soon we would be getting out of here.  Then she asked how we were going to get all the furniture back.  I asked if she was thinking that we were in a different place from our home and that the furniture had been moved here.  She said yes. Like Capgras Syndrome, this is a Delusional misidentification syndrome.

I just went back again.  This time she asked me to take the girls out of the bedroom.  When I asked if they were our Granddaughters, she said no.

At the same time, earlier today when I mentioned the library, she suggested that we eat lunch there.  Since we couldn’t find a parking place, we at at Bobo’s Drive-in.  At the library, she managed to pick out two books from the large print section. We had sundaes at G’s after the library.  When we got home she ended up wanting a nap.  After an hour and a half, after taking medicine and using the bathroom, I took her out to watch television.  She got up and headed back to the bedroom to nap some more.I had to wake her up for supper.

Back again. She is just having a terrible time accepting that it is night and time to be in bed.  She wanted to get dressed this time.  It is about 12:15am at the moment.

I have just been with her a few more times.  The last time included a snack and a paper towel to wipe up something that was not there.  It is about 1am now.  I am wondering how much of the night will be spent with the delusions and hallucinations.  Last night we were up quite a number of times.  There has been very little sleeping in happening in the last week or so.  The interrupted sleep is not helping the coping skills, nor is it helping the delusions and hallucinations.

I am going to edit this now and get to bed in hopes that my presence will help.  There is no good reason to hope it will help, but I am too tired to stay up any longer.  I guess interrupted sleep is better than no 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.