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June 11, 2010

Cold Feet and Legs Scared Me

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , |
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She was cold up to her knees.  We called Hospice; the Nurse just left.  I have been in many hospital and Hospice House rooms as the end approached and finally came.  Cold feet meant that the end was creeping up the body.

Her vital signs were good this afternoon when our regular Hospice Nurse made her visit.  The conversation then suggested that the week end, but not likely past the middle of next week would be the time of Mary Ann’s departure.  The fact that she is taking in no food or water played into that expectation.  She would not take even a straw full of water dropped into her mouth.

When we uncovered her tonight to change her, I felt her cold feet.  There is a light yellow hue (not jaundice sort of yellow) up to her knees, and to my touch she feels very cold.  The Nurse checked her pulse in her foot and it was still strong.  Mary Ann’s feet did not feel to the Nurse to be cold in the way they are cold when the dying process has reached the final stage.  There was no mottling on her legs, something expected when death is getting near. Her fever was back to almost normal.

The Nurse reassured us that given the signs, she was very likely to make it through the night. The thought that she might go tonight scared me.  Of course, it is hardly a surprise that her death is imminent.  My defense mechanisms are holding tight and trying not to let go until the end actually comes.  As a result, I am living in a holding pattern.  When there is not some change that tells my insides something else, they maintain the illusion that this will be going on indefinitely.  Every time I go in and look in her face, my insides waver — reality begins to overwhelm the defenses.  The cold feet and legs breached the defenses and started to crack open the dull pain in the belly.  The Nurse took the pressure off and the crack closed for the moment.

One of the spots from lying on one side was concerning this morning.  That red spot needed some attention, so when Nurse Emily came by, we asked her to check it.  She went back to the office to get a translucent dressing to put on the spot.  We will turn her more often tomorrow (morning, noon, supper time, before bed).

During the day three different times spread throughout the day, Mary Ann’s face indicated that she might be in pain.  Each time we gave the lowest dose recommended of Morphine.  Each time it seemed to help.

Hopefully there will be some rest tonight.  Today was a day with much less activity than yesterday.  I got a routine fasting blood test this morning at a nearby lab.  Somehow, a small chip managed to break off a spot on a lower tooth in the very front of my mouth.  My tongue spent twenty-four hours rubbing against that spot — no matter how hard I tried to stop it.  The pain in underside of the tip of my tongue forced me to call the dentist.  He filed it off the rough edge of the tooth so that for the moment the pain should subside  There will have to be more work done at some time in the future.

Last night when I first went to bed, I thought I would leave the light on and watch Mary Ann breathe.  Sometime just before 3am and realized that I could turn off the light I was using to see her body move with her breathing, since I was asleep anyway.  So much for that idea.

Somewhat reassured about tonight, I hope to get some rest.

 

June 9, 2010

Do you know how much I love you? “Yeah.”

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , |
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She mouthed the answer, “Yeah,” but she may as well have shouted it from the rooftops.  I responded, “Thank for the best gift you could ever have given me.”  She has not moved her mouth in response to anyone or anything in about a day and a half.

Her eyes have been closed most of the time.  One eye has opened on occasion, but with little evidence there was much consciousness behind it.  When I came in to be with her for a bit this time, both eyes were open.  I wasn’t absolutely sure she actually seeing me until she mouthed her response.

Her fever is stable at the moment, only a degree and a half above normal.  It has been at that level all afternoon and evening.  We will still use a Tylenol Suppository tonight to try to keep it from rising by morning.

Today was a typically busy Wednesday, in spite of what is going on here.  The Spiritual Formation group met on the deck.  I realized again just how important that two hours weekly is for helping me keep my perspective and my spiritual focus.

During that time Volunteer Elaine came and read to Mary Ann.  Shortly before the end of the group meeting, Bath Aide Zandra came.  We figured out that she had been coming to see Mary Ann twice a week for almost eight years.  No wonder she has shed some tears.  Zandra did a thorough job on Mary Ann’s bed bath, hair washing, as well as changing the bed with Mary Ann in it.  It was good that Lisa came in since she is experienced and could lend a hand.

Hospice Social Worker Kristin came by for a while.  It was helpful to have her knowledge and experience available as we talked through what is going on here.  She confirmed what I already knew, that when death comes, the Hospice Nurse will make the necessary phone calls to get all the basic tasks accomplished so that the family can focus on their notification calls.

Landscaper Sheila came by to work on the garden and waterfall, doing clean up, adding a couple of things needed.  As a gift, she put some Petunias in a huge pot on the ground at the edge of the deck.

Marilyn, a member of the Lead Staff at the church from which I retired, stopped by to spend a few minutes with Mary Ann and some time with the rest of us.  She shared a reading and prayer with us, providing some words of reassurance about the Lord’s presence with us no matter how stormy our life may be at the moment.

Pastor Mike, who will preach at Mary Ann’s funeral (why doesn’t that get any easier to say), stopped by to spend a few moments with Mary Ann, and share some time with us.  We reminisced a while since our history together goes back to 1972.  He listened to stories about Mary Ann.

Then friend Jeanne came by to spend a little time with Mary Ann.  It was a difficult time for her.  Pastor Mike was still there, so we talked together about how hard it is to handle what is going on here.

I have to say, we started out with the refrain that we don’t like this, and as time goes by we are not liking it more and more.  That is an awkward way of saying it, but you catch my drift.  It is more and more painful to go into the bedroom and look at her pretty face, immobile and helpless — at the very same time it is more and more painful to be outside of the room and not with her.

I am glad to be able to feel that pain.  I don’t want it, but it is reassuring evidence that I am still alive and still care and not in denial.  It has always struck me that when someone has a paralyzed limb, one way to check whether or not it is healing is to stick a pin in it.  If the owner of that limb jumps in pain, the arm or leg is alive — healed.

Those who have been where we are, but for a much longer time, have often commented that after a while, they just can’t feel anything any more.  They go numb.  Good news brings little joy; bad news brings little pain.  They have to insulate themselves from their own feelings.  The ups and downs have worn them down.

We are still able to feel the pain.  I can assure you it is more than a pin prick.  Because we can still feel the pain, we still get to feel the 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.

 

June 8, 2010

“Probably not today, but I could be wrong.”

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , , , , , |
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I called the Hospice Nurse when I saw Mary Ann shivering at bedtime last night.  She suggested I take her temperature, and if it was over 100 degrees, she told me to give her some Tylenol (rectally, since she can’t take oral meds any more).  Her temperature was below that.  I covered her to help with the chills and eventually they subsided.

When I got up this morning, the first thing I did was take her temperature.  When taken under the arm it is necessary to add a degree to get the actual internal temperature.  It measured 102.8 plus the added degree, 103.8.  I gave her the Tylenol and phoned the Hospice Nurse.

When Hospice Nurse Emily came over, she checked Mary Ann’s vital signs.  The fever was a little lower than earlier this morning, but not much.  Mary Ann’s blood pressure was fine, her oxygen level was fine (she is receiving oxygen), her lungs were clear, her heart rate was up some.

Nurse Emily said that her heart is beginning to work harder.  The fever is often a part of the process.  Mary Ann clearly has begun actively dying.  Emily said it this way, “Probably not today, but I could be wrong.”  She added later in the day that she expects Mary Ann to be gone by Friday based on her assessment of her condition.

Those words were very difficult to hear.  Lisa, Micah and I keep telling each other how much we just don’t like this.  It is, of course, a good thing for Mary Ann to move to the next leg of her journey, free of all the problems she has endured here.  With that said, we still don’t like it.

The good news is that Mary Ann continues to appear very comfortable.  The fever has edged down a bit.  Mary Ann is not particularly pleased when we jostle her around and poke things in her bottom, but that is just part of it.  Other than those times, she rests peacefully.  Her breathing is not labored.  Her heart rate continues to increase.  Her normal is about 60.  When Emily checked it this morning it had risen a little over 80.  The last time I took her pulse this evening it was about 100.

We have spent the day talking about the funeral, whom to call, what to do back in Northern Illinois where we both grew up and still have family and friends.  The words come out of my mouth as if we are just making funeral plans for someone.  My gut is doing flips while wearing cement overshoes.  (I have no idea what that means other than that it hurts like Hell.)

I have had to finally start thinking about the afterlife.  Hers will be great.  Mine, not so much.  I started making a list of things that I will need to do.  Discontinue Lifeline, let the Bath Aide know not to come — very many more things like that.  What will we do with Mary Ann’s clothes (I can hardly stand writing this) and when.

As I am writing this I am trying to move inches along the path of coming to terms with what is happening.  This morning, long time friend, John from KC, called and offered support.  Later today, Volunteer Coordinator Mary and Parish Nurse Margaret stopped by, brought cookies and spent a little time with Mary Ann.  She, of course, does not respond at all any more, but it is very likely that she hears what is being said to her.

Son-in-Law Denis and the girls headed back to Kentucky.  Lisa has stayed for a few more days, depending, of course, on what happens when.  Micah, Becky and Chloe spent the afternoon and evening here.

We are in a time warp.  There is no sense of what this day is in relationship to other days.  Minutes seem like hours.  Days seem like an eternity — but not long enough to be with Mary Ann.  Sometimes we wander around the house.  Sometimes we eat.  Sometimes we talk.  Sometimes we sit.

We now have all the elements of the Comfort Kit that Hospice talks about.  We have Morphine if there is respiratory distress or severe pain.  There is none so far, other than the heart pain that subsided with the oxygen and one tiny dose of the Morphine.  We have Tylenol tablets for the fever and will receive Tylenol suppositories tomorrow from Hospice.  We have Ativan tablets and will receive Ativan suppositories tomorrow.  Ativan will be used if and when the agitation hits that often comes and the dying process moves along.

I just glanced at the last few posts on this blog.  I can’t believe how fast things are moving.  There are some things that are helping us as we move through this time in all our lives.  I have probably said them before, but I just can’t remember at the moment.  One thing that helps is that there is not so much as a hint of wondering about Mary Ann’s secure connection to a wonderful future.  We don’t have the tools to form a picture of it, but we have no need to do so.  Our faith life as a family allows us to relax and accept the gift of a future given freely by a Loving God.  There is no time that we need to spend with any distress about her future.

We have a strong family with no baggage, no unfinished business to complicate the process of letting go.  We accept that we are not perfect.  I have not given Mary Ann perfect care, but there is a forgiving Lord who frees me from that guilt.  Mary Ann has an estranged Brother, whom I have promised to tell that she forgives him.  The result of all that is that we have the privilege of feeling the pain and sadness, celebrating her impending freedom, all with a peace that winds through our grief.  There will be tears, sometimes uncontrollable, but no despair. We don’t have to like it, but will will live through it, hopefully stronger than before, more compassionate, free to live meaningfully no matter what comes next.

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.

 

June 6, 2010

Denial and Funeral Planning Don’t Mix Well

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
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What will she wear, what songs will be sung, what passages read.  We talked about some of those things years ago when we filled out forms for a Pre-need plan at the local funeral home.  The major decisions are already made.

I have to admit that it is painful even to talk about such things.  It was fine to do so many years ago — not now.  I am refusing to allow it to sink in and touch my gut.  The pain is there, but it is an aching now.  I have tasted it enough to know that the pain will sharpen and overwhelm when it breaks open.  Certainly I will survive as have tens of millions before me.

Friends Mike and Judy came over to spend time with us today.  As always it was a good and meaningful time.  Mary Ann connected with their presence and appreciated it.  Since Mike is the Pastor who will preach at the funeral when it comes, we needed to talk some about that.

Later, Pastor Jim, who followed me as Senior Pastor of the congregation I served for a dozen years, came over to celebrate Holy Communion with us.  There were enough of us to feel like a congregation.  Pastor Jim provided a meaningful ministry through a service of Scripture, prayer and song.  With three Pastors, two Spouses of Pastors and one Daughter of a Pastor, we surprised Jim by knowing the words to the songs (multiple stanzas) by heart.  He didn’t have to sing solo.  We were a choir.

One of the songs we sang is “Beautiful Savior.”  Both Mary Ann and I grew up in the same congregation in Aurora, Illinois.  Every Sunday worship through all the years we were growing up ended with “Beautiful Savior.”  As we gathered around Mary Ann’s bed and worshiped, sang and shared the bread and wine of Holy Communion, there was a peace about what is happening.  Mary Ann was a part of it even if she was not able to sing out loud with us.

With that said, as Son Micah commented later when he arrived, “this is hard.”  It hurts.  It just hurts.

Mary Ann seemed to have a comfortable day.  Last night, I was up a few times to listen for her breathing.  I tried to move her a little to minimize the pressure sore problem.  This morning when Lisa and I changed her, she did not show much evidence of the first stage of pressure sores — just one red spot on her ankle.  It was a relief to me that she seemed to fare well last night.  She does not move at all other than a foot moving a bit once in a while.  That is a formula for bedsores.

One happy surprise was that while Lisa and I were rolling Mary Ann this way and that to change her and check her, it just caught our funny bone.  We started laughing and so did Mary Ann.  It was not audible, but had it been, it would have been a belly laugh.

Lisa headed off for church and a local Art Fair.  I read a bit, then started a new book, titled Broken Open, by Elizabeth Lesser.  It is subtitled “How difficult Times Can Help Us Grow.”  How is that for timely.  It was recommended by the online Lewy Body Dementia Spouses group.

I decided to move into the bedroom to read, just so that I could be with Mary Ann.  It was a pleasant experience.  She seemed comfortable.  I asked how she was doing and she responded audibly that she was okay.  We just had some quiet interaction.  I gave her some water.   I realized just how wonderful it is to be able to spend this time in our lives together at home.

Later in the day, Son-in-Law Denis, arrived to provide Lisa with support and help with the girls.  Denis and the girls will be going back to Louisville on Tuesday.  Son, Micah and Granddaughter Chloe arrived at about the same time as Denis.  This was around the time Mike, Judy and Pastor Jim left.

Lisa and I changed Mary Ann again, examined her for red spots and turned her.  It was disappointing to see some red areas, indicating the potential of pressure sores beginning.  I plan to phone the Hospice Nurse tomorrow about the possibility of a hospital bed with the self adjusting air mattress on it to help avoid the worsening of those spots.

One annoying element in the day was the waterfall simply stopping.  It just stopped.  No one did anything to it.  It just stopped.  I was able to get hold of Brad (through his wife since they were driving) who promised to come after his work tomorrow afternoon to work on it.  Brad installed the pondless waterfall.  I certainly realize just how important a role that addition to our home is now that it is not working.  We built the sun room so that we could see the waterfall!

While Mary Ann is, of course, very vulnerable, and anything could happen at any time, she still seems fairly strong.   She ate a small dish of ice cream this afternoon while lying in bed. The Orthostatic hypotension has been so bad that it is pretty much impossible to sit her up for more that a moment.  Her blood pressure drops and so does she.

We continue to take things as they come, grateful for what we have, hoping for a peaceful release when the time comes.

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

 

June 5, 2010

Heart Pain Returns, Oxygen-Morphine Help

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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The oxygen is now running.  It took the oxygen and only one very small dose of Morphine to relieve the heart pain this morning.  Since then Mary Ann has been in bed 100% of th time.  She did not want to sit up any of the times we asked her today. She seldom moves at all, but just lies still, with her eyes open most of the time.

Daughter Lisa and I changed her while she remained lying in bed.  At this point it is not so much how difficult it is to help her in the bathroom but how hard it is on her for us to drag her around that has led us to that approach.  Each thing in its time.  We now have briefs that tape on the sides.

Mary Ann did take some sips of water at various times.  Earlier today, she ate a single serving container of tapioca.  That has been the sum and substance of her nourishment today.

Words are few and far between and barely audible when they come.  We have given up trying to give her any medicine.  She just can’t/won’t take it.

Daughter Lisa was due to leave tomorrow.  She has decided to stay longer.  Our Son-in-Law Denis will be arriving tomorrow evening.  He will stay a day and then take the girls with him back to Louisville, KY.  Gratefully, he has a huge, very close family there, with lots of Sisters and Nieces waiting in line to help with the girls while he is at work.

Needless to say, I am relieved that she will be here at least for a while as this new reality sets in.  Lisa has been a Certified Nurses’ Assistant [CNA] and later an Administrator of a large multi-level Senior Care complex.  She is checking carefully for any red spots that could develop into pressure sores, making sure her Mom is shifted regularly.

Son Micah opted to come for the day today. He dropped out of a BBQ contest in which he was enrolled to spend the day here.  This is hard on both of the kids.  We are all helpless to do anything about this, so we just hang out together, staying close to Mary Ann.  This could go on for some weeks.  The kids will have the challenge of determining when to be here and when to be taking care of their primary responsibility to their respective families (who are wonderful and understanding).

I was planning on attending a wedding this evening and offering the mealtime prayer at the reception.  In fact, that was one of the reasons Daughter Lisa had planned on returning home on Sunday rather than Saturday, so that she could stay with her Mom, allowing me to be away from the house for the wedding.  When all those plans were made, none of us had a clue about what would be happening.

We  have seen a Guiding Hand in the way things have been playing out.  Mary Ann’s decline came on suddenly only days before Lisa’s scheduled visit.  The girls were scheduled for a sleepover with friends, so they were not here last night to be disturbed by the Hospice Nurse and the oxygen delivery.  When there are huge things that are out of control, it is not unusual to notice little gifts that come along the way.  They are signs that we are not alone in this journey.

Tonight’s wedding was the wedding of Christine and James.  Chrissy will soon be an ordained Pastor.  I have enjoyed watching her grow in her commitment to that service.  On occasion when she was in town, as she began and continued her training, we would talk over coffee.  Those conversations always stretched me intellectually and Spiritually.  She has been in Africa a couple of times trying to make a difference for good.  She has a view of humanity that is not limited by national boundaries or ethnicity.

I didn’t like missing the wedding, but, just as I mentioned in an earlier post when I had to miss Katie and Jacob’s wedding, while they spoke their vows I was doing what they were promising.

Time for some rest.

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

 

June 5, 2010

Oxygen and Morphine Coming Tonight

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , |
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We may or may not use them since the pain has now subsided.  Mary Ann had some heart pain tonight.  At first, one nitro pill seemed to take care of it.  Daughter Lisa was with her while I had a couple of hour break at a church event.  When I returned, Mary Ann said her chest still hurt.  We used two consecutive nitro pills about ten minutes apart.  She still said she had the pain.

At that point, I phoned the Hospice Nurse.  She suggested trying a third nitro pill.  She also said she would call the Medical Director.  She thought he would probably suggest the oxygen and Morphine.  The third nitro pill seemed to work, but the wheels are now in motion for us to receive the oxygen and Morphine tonight.  It is about 11:30pm as I am writing this.

Today had some tough times and some good times with Mary Ann.  The first activity this morning was at least a half hour of intense physical exertion in the bathroom.  It exceeded the terrible Saturday morning bout a couple of weeks ago.  There was a lot of production this morning when on the toilet stool (a good thing), but the fainting and form of seizure that results in her stretching out and stiffening all combined to make it harder than ever to handle.  I was dripping in sweat by the time it was over.  I did not call Daughter Lisa for help since I wanted to determine whether I would be able to do it by myself — probably not much longer.  I will need to figure out a way to take care of those tasks while she is still in bed.

The good times included a thorough cleaning by the Hospice Aide.  It was a bed bath with the addition of hair washed with shampoo and water in an inflatable basin for that purpose that I bought at the Munn’s Medical yesterday.  Sonya got her dressed and brought her out in the transfer chair.  She had the best hour or so we have had in many days.  She greeted Lisa and Granddaughters Abigail and Ashlyn.  She drank Cranberry juice, she ate tapioca and yogurt, drank water.  Then we rolled her outside to join Lisa in watching the girls use the little slippery-slide Lisa got at Target yesterday.

Neighbor Carol came by and spent time with Mary Ann, as well as Lisa and the girls.  After a while, Mary Ann needed to lie down again.  Friend Jeanne came by for a few minutes to see Mary Ann, as well as Lisa and the girls.  Mary Ann stayed in bed either resting with her eyes sometimes open, sometimes closed for the rest of the day.

At one point in the afternoon, she seemed to want to sit up, so Lisa helped her get up on the side of the bed.  Shortly, she fainted and shifted into the stiff as a board mode.  We got her back lying down.  Later, just before I left for the Youth Fundraiser, Lisa and I took her to the bathroom.  It went reasonably well, but ended with the stiff as a board mode.

…It is now about 12:30am.  The oxygen is here.  Hospice Nurse Lisa brought the Morphine and explained how and when to use it.  Her vitals are so good (other than the blood pressure) including the oxygen saturation percentage, that it seems unnecessary to use the oxygen right now.  If the chest pain returns, I will start it.  That is in accord with Nurse Lisa’s counsel.  The same is so with the Morphine.  I will give the lowest dose if she gets agitated, has trouble breathing, or the chest pain returns.

It was quite a flurry of activity, maybe not actually necessary at this moment since the pain subsided.  It is comforting to have helpful options available for the time that those options are needed.  Things seem to be moving both up and down pretty quickly.  Knowing Mary Ann, I will make no predictions on how things will proceed from here.  I am just along for the ride.

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.

 

June 4, 2010

Kids and I Meet with Hospice Nurse

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , |
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We are really not liking this!  The four of us, Mary Ann, Lisa, Micah and I are in limbo.  Now we know more about the landscape of limbo, at least this one, but it is still limbo.

Mary Ann has not yet begun actively dying.  Vital signs are not falling into the pattern of those dying of physical illnesses such as Cancer.  That could be comforting, especially to kids who live out of town, hoping to have time to get back when the end is near.

Of course, it is not likely to work that way with Mary Ann.  Apparently, dementia patients often don’t play by those rules.  They may have solid vital signs up to the moment they die.  When the mind precedes the heart or other organs in precipitating death, it can just happen whenever it chooses. There may be no warning.  It just goes with the territory.

I have become accustomed routinely to listening carefully when Mary Ann is sleeping or unconscious.  I listen to see if she is still breathing.  There is a new level of awareness of how easily my listening could reveal that the end has come.  Even after Hospice Nurse Emily said that, I still expect there to be more preliminary signs that the end is nearing. Many of those in the online group of spouses with Lewy Body Dementia, have described a traditional shutting down when their Loved Ones died.

When Son Micah asked if Mary Ann was now on a trajectory of probably weeks, Nurse Emily said that what has been happening suggests that that is a correct assessment of her condition.  She quickly added the disclaimer, that things could change and Mary Ann could bounce back to better health for a time.

We talked about how much of what is happening might have more to do with the medicine than the disease process itself.  Nurse Emily reviewed what has been happening in these past days, noting that Mary Ann has not had many of her pills on a regular basis.  While the meds may be having some impact, the trajectory of the decline seems pretty clearly to be the disease process bringing her to the last stage of the disease.

In responding to my request for either some form that is easier to administer or permission to drop Mary Ann’s Crestor for cholesterol, the doctor suggested discontinuing it.  He said we could crush it if we wanted to continue administering it.  The truth is, I haven’t yet tried to give her any of her night time meds.  At this point in the process, Mary Ann’s comfort is the prime issue.  Any of the meds that will help keep her comfortable, have priority.

Even food is optional.  If Mary Ann wants some thing to eat, or will take it if put to her lips, she will eat.  If she indicates she does not want the food, that is her choice to make.  If she will take water or juice, we will be sure she has all she wants.  If she will not, that’s that. When at this stage in life, the body needs very little to sustain itself.  She will know what she needs and when — and if she wants to have it.

While she would not so much as take a drink of water most of the day today, late this afternoon, whe she started moving around in bed, Daughter Lisa got her up, helped her with personal needs, and started feeding her applesauce.  She ate about a cup of applesauce followed by a small piece of ice cream pie, followed by some water.  Lisa fed her the applesauce and I fed her the pie.  She was up for a couple of hours.  We are suspecting that the Granddaughters’ activity helped stimulate her to stay present with us for such a long time. I took her in to lie down when Nurse Emily came for the family meeting.

There is absolutely no predicting how this will go.  Mary Ann is not about to follow anyone’s expectations for the path she will take.  This will happen on her terms, and no one else’s.  God’s role was making her, not telling her how and when to die.  Gratefully, God’s love for her is without limit, just as it is for the rest of us.

With that said, those of us who love her certainly are in limbo.  It is too soon to begin grieving her loss.  She is not gone.  It was sort of odd to hear Nurse Emily speak to us words that I have spoken to hundreds of others in forty years of ministry.  She urged us to work through our feelings and when we are ready, to share with Mary Ann our love for her and let her know that we will be okay when she decides she is ready to go.  It is not urging a person to die, but giving permission to go when the time comes.

Mary Ann took a few sips of water when I went in at about 11pm.  I gave her a heart med and one that helps her sleep.  She seemed to manage swallowing them.  I will be very interested to see if leaving out so many meds will affect her sleeping pattern.  I hope we can find our way to restful nights as often as possible in what time we have left together.  That would be good 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.

 

June 2, 2010

Almost No Food in Four Days!

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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She ate one six ounce container of Yogurt for breakfast.  That was the biggest breakfast in four days.  Then she didn’t even eat the ice cream pie for supper.

I made the mistake of taking her blood pressure when she was lying in the bed this morning.  I thought it would be up some since I restarted the Midodrine yesterday to see if we can reduce the fainting spells.  Her BP measured 280/130.  That is frighteningly high.  Here is the kicker: twenty minutes later, while sitting at the table I measured it again. It was 95/75.  In the mid-afternoon, while she was lying down, I took it again.  It was 245/115.

Since we have few options, I plan to continue the Midodrine at some level.  She has still been fainting, in fact there is a new twist.  After being out for a while, twice shen stiffen like a board in a mild seizure-like event.  She wouldn’t bend — in the middle or at the need.  She was stretched out full length, locked in that position.  It happened once when trying to get her back into bed.  It happened a second time while on the toilet stool, dealing with a messy BM.  The good news is neither did I become frustrated or get upset.  I just laughed.  I waited until the stiffness seemed to soften a bit and just picked her up and repositioned her.

I am tired of being upset about what is happening.  It is time to just deal with it.  I am grateful that our Daughter, Lisa, and Granddaughters, Abigail (7) and Ashlyn (5) arrived late in the afternoon.  It has been good to see the girls and have Lisa to talk with.  Just as Son Micah got to experience the challenge of bathroom duties on Monday, Lisa got to experience that challenge today.  Mary Ann responded a bit a couple of times to Lisa.  Whether she is able to respond or not, it is clearly meaningful for Mary Ann to have them here.

I did get to talk with someone on the Staff at the Senior Diagnostics Center at a local hosptial today.  The person was a bit abrupt and on hearing that Mary Ann had been diagnosed with Lewy Body Dementia two or three years ago, she responded that LBD folks go quickly.   While I do not wish to ignore the harsh reality of our situation, it was no fun to have it tossed in my face in such a matter of fact way.  I explained the situation, adding that her vitals are still pretty good.  She did not dismiss us out of hand, but seemed genuine in saying that she would check with the doctor and call us back tomorrow.

I have very low expectations of any meaningful option emerging when she calls back.  There are some hints that the Midodrine raising her BP is allowing a little more mobility — at least for a few moments before fainting.

It was good to have an extra set of hands and arms when the heavy lifing came.  Lisa was a CNA for some years while in high school.  She ended up Administrator of a large multilayers facility for the older population.  She has been parenting full time since the girls were born.

Tomorrow evening, Son Micah will join us as we look at the rapid developments these last few days.

There is more that I could say, but I am struggling to keep my eyes open.  It is time to 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.

 

June 1, 2010

Last Ditch Effort

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , |
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Her vital signs are still good.  It is too soon to give up and simply wait.   Her lungs are clear, her blood pressure is within her normal wide range, heart beat is steady and normal for her, oxygen saturation percentage is good.

She managed to swallow most of her morning pills with a little juice.  She was in bed the rest of the day.  Every two hours I got her to take meds I couldn’t get her to take yesterday.  Tonight, she indicated again that she would eat some ice cream pie.  She ate a small piece.

Then came the dreaded bathroom battle with some messy BM.  The difficulty is at a 10 each time now.  I will do it as long as physically possible.  I can only hope that my muscles will respond by strengthening to match the task. I got her back in bed and shortly thereafter gave her the nighttime pills, which she did manage to swallow, with difficulty.

The last ditch effort is this.  I mentioned it in last night’s post.  I am giving her less Seroquel in hopes she will be able to sleep less during the day and be more alert.  I have begun the Midodrine again to raise her blood pressure to a level that months ago seemed to control the fainting.  I recognize that these changes not likely to make much difference at this point, but the options are simply slipping away.

I managed to get hold of the office of the Psychiatrist that was recommended as one capable of handling this complex a combination of problems.  I was informed that he does not take outpatients.  There is a Physician’s Assistant that works with him who does.  An appointment with her would be at least a month out.  At this point a month is an eternity.  We are focusing on hours and days in determining what to do. The only access to that doctor would come through the inpatient Senior Diagnostics program at the hospital.  I may call and go through the process that determines eligibility for admittance. We are running out of options.

The Hospice Nurse is going to check with the Pharmacist to see how many of the meds might be available in liquid or some other form that would be easier to take.  She is also going to have the Pharmacist see if there are any meds that can be eliminated since they are for long term issues.  For instance, the cholesterol medicine, which is a fairly low dose seems superfluous at this point.

Volunteer Tamara stayed with Mary Ann for a while this afternoon.  I was able to get out and run a couple of errands.  One resulted in the added frustration of replacing a broken wireless network adapter on the computer we have in the living room so that Mary Ann can see pictures of the Grandchildren.  Of course, I can’t get the new adapter to work properly.  The stress of trying to phone someone and spend an hour or two trying to follow directions is just not something I can deal with at the moment.  At this point, little frustrations become huge quickly.  My lack of computer skills is impressive.  I will leave that problem for another time.

Volunteer Tamara asked if the Hospice Nurse had checked Mary Ann for pressure sores.  Now that she is lying in bed all day long every day, that is likely to become a problem soon.  Daughter Lisa has suggested that I turn Mary Ann when she is in bed for a long period of time.  I realized that the Hospice Nurse probably should have picked up on that concern checked for problem areas and offered a hospital bed again.  I will phone and ask about that since I need to ask the Hospice Aide to bring more wipes and chux.  At the Nurse’s suggestion, I am using chux to catch what has almost constantly been coming from Mary Ann’s mouth these last three days.

Since Mary Ann has been sleeping all night long the last few nights, I am not sleep deprived.  I still feel as tired as when the nights were difficult.  I have little doubt that has do to with the mental and emotional drain of accommodating the recent changes and their implications along with the frustrating search for adequate medical support.

One piece of good news is that Daughter Lisa and Granddaughters Abigail and Ashlyn will be arriving tomorrow afternoon.  They plan to stay for a few days.

We have been in uncharted territory for most of the time the Parkinson’s has been around, and certainly since the dementia has joined the fray.  The distance to the end of this uncharted journey seems to be diminishing at a frighteningly rapid pace.  I will continue to search for options, at least while those vital signs stay strong.

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.

 

May 31, 2010

Scary Day!

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , |
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I simply could not get her pills into her mouth and swallowed this morning.  It is the first time this has happened other than many weeks ago when she slept through a few days.  She drank a couple of ounces of Cranberry juice as I prepared to give her the pills.  Then her lips sealed shut and she ceased to be responsive at all.  I was going to try to force the pills into her mouth, but when I determined that she could no longer drink the juice or water, I knew that I could not risk her choking on the pills.

Yesterday she stopped swallowing after swallowing her pills and eating a few spoons of yogurt. At lunch yesterday, she stopped swallowing after a few bites of food.  Last night she managed to swallow her night time pills.  Today, she stopped swallowing anything, including water for the entire day.  She got no pills, no food, no water.

She sat up some, with the saliva coming from her mouth much of that time.  Our Son, Daughter-in-Law and Granddaughter arrived in the late morning to spend the day with us.  For a while after they arrived, Mary Ann remained in the chair.  She was pretty much unresponsive, even to our Son, who can always get a response from her.

After a while I took her into the bedroom to lie down.  It became apparent that we needed a trip to the bathroom.  Our Son has been through helping his Mom with bathroom duties, so he helped with the project.  It was a comforting to me for him to have a first hand experience of just how difficult that task is.  It was hard even with two of us doing it.

After that, Mary Ann settled into bed for a long time.  I enjoyed the time with Son, Micah, Daughter-in-Law, Becky, and Granddaugher Choe (11yrs old).  We spent most of the day watching the large screen wildlife display provided by the sun room and waterfall at the back of our house. I realized I have little to talk about other than Mary Ann and the birds.

We talked about the current change in Mary Ann’s situation.  It has profound implications.  We have both signed Living Wills excluding a feeding tube.  If Mary Ann is no longer capable of swallowing food, we have just come to the end of a long journey.

Son Micah and Daughter Lisa (in Kentucky) talked on the phone for a while so that Lisa would be fully aware of what is going on.  She and the girls are due in this Wednesday evening to stay for a few days.  This scared all of us.  We are not ready for things to move to the last stages.

I phoned Hospice to talk with the on-call Nurse.  When she responded to the page, I explained the situation, voicing special concern that Mary Ann was not able to take  her morning meds.  The Nurse mentioned that in some cases meds could be given rectally (whoopee!).  She said she would phone the Pharmacist and check to be sure of that. When she called back, the Pharmacist had told her that the meds Mary Ann is taking are not ones that have been shown to be effective when taken rectally.  We could do it, but it would not be likely to do much good, if any.

It seemed reasonable to accept one day of no meds, but that certainly could not continue.  I concluded that I would make one attempt at giving them to her orally, and if that didn’t work wait until morning.  I asked the Nurse to connect with our Hospice Nurse in the morning so that we could talk through options.

It has been a pretty tough day contemplating what might be coming sooner rather than later.  I went in regularly whenever we saw on the little video monitor that Mary Ann was moving at all.  Each time I asked if she wanted some water.  At this point I am not sure of the time, but around the supper hour or a little later, she was moving some.  I went in and she took some water and swallowed it — the first time since the few swallows of juice first thing in the morning.

When I asked her a couple of questions, she was able to answer, “no” (more water? get up?).   Not long after that she stirred again and this time was willing to get up.  I asked if she was hungry.  She said, “yes.”

Then came a very pleasant surprise.  I should have known!  On a whim, when returning from getting some coffee, I picked up a Baskin and Robbins Grasshopper Pie.  Mary Ann ate every bite of a good-sized piece of that pie.  She swallowed every bite, and drank lots of water afterward.

She responded a bit to Micah after that.  The Kids headed back home.  Mary Ann soon went back to bed.  I decided I would act as if she had no trouble swallowing and follow the usual routine of telling her what I was doing, sitting her up on the edge of the bed, putting the pills in her mouth and giving her water to drink through a straw (the norm for how she drinks).  She swallowed the pills!

I did choose to reduce the Seroquel from the 150mg she has been taking since January, to the 100mg she was taking before that.  Since it has become absolutely clear that the Seroquel exacerbates the problem of hallucinations, and since one of its main purposes is to produce sleep (too much daytime sleep in the last days) it seems reasonable to try reducing this.  In some folks who have taken Seroquel, it has produced a powerful drugged state.  We are living pretty much at the end of our options, so I am giving it a try.  Of course I may regret doing so depending on what happens.  There is just no clear and standard approach to this form of dementia.  It is just too unpredictable with no consistent responses to medications.

One characteristic of forms of Lewy Body Dementia is that people can present with symptoms that cause Hospice or whoever is doing the medical care to suggest that the family be notified that the end is days or hours away.  Then the patient can turn around completely for no apparent reason and return to relatively full functionality.  With some folks in the online LBD Spouses group that has happened more than once.

I don’t know if we have just come back from the edge to have lots of time yet, or if tomorrow will bring us back to the edge.  When I got out of College and Seminary at 26 years of age, I knew so much.  Now at 67 I know so little.  What happened??

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

 

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