September 18, 2010

How would you finish this sentence?

Posted by PeterT under Daily Challenges, Hospice, Life History, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , |
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“If not for me, the world would have missed….”   The Hospice Chaplain began his message with that question during the Memorial Service last Thursday evening led by Midland Hospice, the organization that sponsors the Grief Support Groups I attend.   

It is not unusual for people to be so self-deprecating that they find it hard to presume to suggest they have made a difference in the world.  It seems arrogant to talk as if we are God’s gift to the world.  If we happen to be in the mode of feeling sorry for ourselves, we will claim we have done nothing anyone will miss.  If we have had a critical parent or spouse or close friend, we may have concluded that just as they have said about us, we do not measure up. 

Sometimes it is actually our inflated ego that sabotages our ability to finish that sentence with anything of substance.  What I mean by that is we sometimes demand that for something to qualify as an achievement that would be missed, it has to be something so much better than what the ordinary folks can do that we received accolades for it. 

What ordinary things have you done?  They are likely to be the things that the world would have missed most.  That you have survived what you have been through is a remarkable accomplishment — no matter how it compares to anyone else’s accomplishments.

The Chaplain was very insightful when he followed that question with some clarification.  He pointed out rightly that most of us struggle with memories of things we did not do well, times we were impatient, harsh, unsympathetic, times we did not do what we should have done, had we been better caregivers.  He urged us to set those thoughts aside for the moment, and focus on what we did do for our Loved Ones.

I have admitted here more than once that the most painful memories are memories of just how debilitated Mary Ann was getting and how little I allowed that to enter my awareness.  I was not always as sympathic and understanding of her limitations as I should have been.  This morning, a simple question some neighbors asked when we crossed paths at the Farmer’s Market planted a seed that sprouted twenty or thirty minutes later.  The question was about cooking, did I do the cooking for Mary Ann.  I admitted my limitations in that area, but answered yes.   Later, as I was leaving, my mind wandered back to that conversation.  A silly claim that I had made came to mind, that I made the best peanut butter and jelly toast around.  I remembered toasting the bread to exactly the color that she liked, cutting it into four squares and feeding it to Mary Ann, making sure each bite had some jelly and peanut butter in it.  I often added two slices of crisp bacon, each cut in half so that every quarter of the toast had a half slice of bacon on it.  I had a certain order of squares so that she would not have too much dry toast in any one bite.  I anticipated when she would need a drink.  Thinking about that brought back the painful feelings to a level I had not felt in the last three weeks or so.  It was not that impossibly intense level that that could hit like a brick during the first weeks, but it was painful. 

I remembered how good it felt to be able to feed her in a way that brought her some pleasant moments.  I longed to be able to do that again.   As that pain settled in (it stayed for a while), I realized that feeding her that peanut butter and jelly toast with bacon was something that she might have missed, had I not been caring for her.  Obviously, I can’t know what would have happened if I had not existed — whether someone else would have done it.  That is not the point.  I did do it.  I made a difference in her world, just as she did in mine. 

There are, of course, some obvious ways of finishing a sentence like that.  I suspect our Children and Grandchildren would have missed mine and/or Mary Ann’s presence in the world.  Those are easy answers.  It is a healthy exercise to think about the impact we have had, the ordinary impact, just being a part of people’s lives.  Simply having answered the Call to Live by continuing through each day.  I have spent time in conversation with many suffering from depression over the years.  When someone is depressed, just trying to finish a sentence like this one is more depressing.  The Chaplain made the point that each of us in that room had survived our grief until that moment.  We had survived the death of someone we loved.  Just to have survived what we have been through, whether the loss of a Loved One or the loss of our confidence and sense of self-worth that comes whith depression — just to have survived is an achievement worth adding where the dots are in that incomplete sentence.   

There are so many things that I did not do for Mary Ann or did not do well.  She deserved better.  At the same time, I did make a difference in her life, as she did in mine.  The greatest gift we gave each other was ourselves.  We stayed in relationship with each other.  In doing so we did make a difference.  Each of us would have missed a lifetime of the other’s presence, had we not been there for one another.  As painful as it is sometimes to remember, it is comforting to remember what each of us brought to the other.  That remains.  We both get to keep those memories.

 

August 23, 2010

World’s Fattest Cat

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , |
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Maybe not, but darn close.  One of Mary Ann’s challenges after the stroke was negotiating the utensils she ate with.  Getting food on to the fork or spoon and where is was supposed to go was not an easy thing.  How much we take for granted.  We don’t give a second thought to the matter of getting food into our mouth unless we are using chop sticks or trying to eat peas.  For Mary Ann, just eating a few bits of food could be a major challenge. 

To help with the problem, I got a couple of thick plastic plates from Munn’s Medical Supply.  The plates were called Inner Lip Plates (a trademarked name).  They were just that, plates with about a half inch high lip around the center part of the plate.  They provided an edge tall enough to push the food against it allowing the fork or spoon to get under it without pushing it off on to the table. 

After a year or two of using those plates, it dawned on me that we ought to be able to get plates that we could all use when we ate together with the Kids here.  We had on occasion purchased pieces of pottery from Jepson pottery that had an outlet about 45 minutes away.  His studio was only an hour or so away from us in the other direction. 

We had gone for an outing a couple of times and stopped at his Studio.  Actually, we discovered where it was located when we used the GPS on one of our ice cream runs to Emporia (over an hour away) and we drove right by Harveyville, Kansas on the way.  When we were at the studio, I saw some chili bowls that seemed a practical alternative when Mary Ann was eating soup or ice cream.  The sides seemed to be shaped in a way that might make it easier for her.  She picked out some colors that were very nice, she was very talented in the use of color. 

The Fat Cat actually was the fattest cat by far that I have ever seen in my life.  It owned the floor of the Jepson Studio.  It was friendly and not at all hesitant to engage anyone willing to scratch an ear or pet his gigantic back.  I think the answer was something like 27 pounds when I asked how much he weighed. 

We headed to the Jepson Studio again, this time with one of the plastic plates to use as a template.  He made a ceramic plate with the lip, in the colors Mary Ann had chosen.  It was just the ticket.  He made five more so that we could have six adults using the same plates, with no “special” plate for Mary Ann.  They are beautiful.  He made some high sided bowls that work even better than the chili bowls.  The plates and bowls were heavy enough that we did not need to use the piece of non-slip Dycem to keep her plate from sliding around. 

I have written about this in an earlier post.  I include it here as I review the various outings we took, adding quality to our days in spite of the limitations of the Parkinson’s. 

We enjoyed the trips out to Harveyville, but certainly liked best arriving at the final destination at Braum’s in Emporia where we had Pecan Caramel Fudge Sundaes.  Other times we picked up Friend and Thursday Volunteer Jeanne (once including Volunteer Coordinator/Friend Mary) to head out for a ride that took us to Harveyville and then through the Flint Hills to Alma.  A walk up ice cream shop had opened there after a while, so there was extra motivation to go that direction. 

One way or another, we were determined to get out of the house and so as much as we could while we could.  Mary Ann needed to eat plenty of calories, especially after she began losing weight last summer.  Whatever health issues might be associated with ice cream, they were trumped by the need for a little pleasure in a life that did not offer many. 

 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 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.

 

May 30, 2010

Losing Ground?

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I am just not sure how to assess the day, but I am sure I don’t like it.  The signs pointed to the hallucinations firing up last night.  She was restless at first.  The hallucinations fired up between 3am and 4:30am.  Then she slept for a while.

She did try to get up early, but when I took her to the bathroom, she fainted.  I had to put her back into bed and she slept for a while.  There has been a pattern that has played itself out all day.  When she is lying down, she has often been talking apparently about or to the hallucinations.  I described that before. She often has her eyes open when she lying there talking.

When she became alert enough to sit up, usually wanting to go to the bathroom, after a short time her eyes would slam shut and it would cease to be possible to communicate with her.  She simply could/would not respond.  I had to put her back into bed since there was really no other option.

She did manage to get up for breakfast, but then and most of the rest of the time I tried to talk with her, she could not speak intelligibly.  Once this evening when the words she used were recognizable, they did not match what she wanted.  She said she needed to cook a meal, when it became clear that she intended to say a drink of water.

[WARNING — GROSS CONTENT] I was barely able to get food into her mouth for the little bit she ate. At breakfast, she did get her pills down with much difficulty.  I fed her a few spoons of yogurt before she just didn’t take any more.  I found out shortly thereafter that the last bites had not been swallowed.  As she sat in her chair for a while, I had to get napkin after napkin to deal with what had not gone down, along with lots of clear fluid.  Sorry to include such unpleasant stuff, but it I have passed the will to be delicate and I am too tired to try to think of some cute euphemistic way of saying it.  This matter of not swallowing food and uncontrolled saliva production is a new and unsettling issue for me.

The difficulty in dealing with the once or twice a day intestinal activity really is pretty close to being unmanageable by myself.  To hold up her weight with one arm, as she is pulling away from me while I am cleaning with the other is just barely doable.  That has been continuing for many days now with no sign of improvement.

All of this is becoming a very old story to those of you who read these posts regularly.  What seems different to me is that we appear to be losing ground at a pretty rapid rate by comparison to past declines.  It seems that every few days something worsens.  The changes seem too rapid to me to be a normal part of the disease process.  In my mind the evidence still points to medication issues for the rapidity of the decline.  The trouble is that there seems to be no clear and definitive approach to medicating those with a form of Lewy Body Dementia that produces consistent results.  The same med can produce opposite results in different patients.

I may simply be in denial and the rapid changes may just be a function of the disease.  As our Parkinson’s Speicalist once said, after 23 years of the disease and the meds, there is no telling what problems are caused by side effects of meds and which the progression of the disease.

Volunteer Elaine came over to spend time with Mary Ann this morning while I went to the lake to sit and read and ponder and look for birds.  Today, it was hard to leave, and I couldn’t let go of concern for Mary Ann lying in bed talking to the hallucinations.  Mary Ann ended up sleeping (or just lying there) the entire time I was gone. I just don’t like how much more difficult this is getting and how fast it is moving.  It is not so much life threatening as it is that our system here at the house is being threatened.

One bonus this morning was that Elaine surprised us with a Quiche she made for us while at the house.  Not only that, but Volunteer Tamara had asked yesterday if she could bring food to us again.  When I answered her question about what Mary Ann liked, what popped into my mind was, Quiche.  This morning while Elaine was making her Quiche for us, Tamara brought two more.  Mary Ann ate a piece of one, although the same thing happened that had happened with the yogurt earlier in the day.  I ended up eating a couple of pieces of one and one piece of another by the time the day was over.  They all appear to have home made crusts.  They are wonderful.  One will end up in the freezer in pieces to be heated in the microwave later, but I suspect two of them will be long gone before that happens.

I am hoping for a better day tomorrow since our Son, Daughter-in-Law and Granddaughter are coming over for a while for Memorial Day. The menu will be Quiche — and Glory Days pizza for those who are not into Quiche.

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 25, 2010

Been Dumped!

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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I called this morning to find out how we should go about reducing the medication that seems to be making things worse.  Through his nurse, last week we were instructed to call back after a few days on the newly increased dosage of the Seroquel.  When she called back, she simply said that we needed to find a Psychiatrist to manage the dementia and the meds.  We have just been set adrift and are on our own.

This University of Kansas Neurologist specializing in Parkinson’s is the one on whom we have depended for about fifteen years now.  There are very few options where the kind of expertise needed to deal with Mary Ann’s complex version of Parkinson’s is available.  KU med center is one of the few places in the country.  None of the rest are close enough to do us any good.

I need to find out whether or not he is still willing to continue prescribing the medicines dealing with the motor issues associated with the Parkinson’s.  Then there are some meds that have impact on the dementia, but were prescribed by the Neurologist to deal with the Parkinson’s.  He also prescribed some of the meds that are intended exclusively to help with the dementia.  What happens when we need a refill?

When I asked during last week’s phone call if there were any Psychiatrist’s at the med center to whom we could be referred to manage the medication the nurse curtly told me that they were not taking new patients.

I have begun checking to find out if there is anyone here in this area who is competent in dealing with Lewy Body Dementia [LBD].  It is enough different from Alzheimer’s Dementia [AD], that it will not be adequate to simply be aware of the usual treatments for AD.  So far the responses seem confirm my impression that we are underserved in this area with good Psychiatric/Neurological care.

Whether rightly or wrongly, I have concluded that generally the medical community loses interest in folks in the later stages of life.  Hospice does a wonderful job of helping people during those years with end of life care.  They, however, are not in the business of treating the diseases that bring people to that point.

I will seek out the best care that I can locate here in this area and try to draw the best out of whomever she sees for care.  My goal remains to have the best quality of life possible for as long as possible in the face of a progressive disease process that we cannot stop.

I am apprehensive about how things will go now that we have discontinued the extra morning pill that seemed to make things worse.  It is a pretty powerful medicine.  Reducing it can have a negative impact.  Tonight Mary Ann seems unable to speak clearly — the words are slurred and pretty much unintelligible.  It is making the simplest communication very difficult.  It took a long time to determine that she wanted to sit up on the side of the bed and have some water.  When I gave her the water, she seemed unable to use the straw.  The years of experience giving people wine from a chalice during my active years as a Pastor came in handy as I helped her drink directly from the cup.

This morning Mary Ann got up very early again after a number of times up earlier in the night.  I actually can’t seem to remember how much sleep I got.  I did get to bed pretty early for me.  I think I got a little more between Mary Ann’s dreams.  She was again hallucinating constantly.  This morning she was actually pretty entertaining with some pretty silly comments.  She ate breakfast, then Bath Aide Zandra came.  She did not seem to do well and afterward was unclear that it was Zandra who had been here.

She napped a bit, rested with her head down some of the time.  Lunch was a little harder than usual to get accomplished.  Supper was tough since she just couldn’t hold her head and the upper part of her body up for me to feed her.  Holding her up and feeding her is really very difficult to do.  When we finished, she had eaten a fair amount of meatloaf, if little else.

Volunteer Tamara came this evening while I got to the grocery store.  It has been tough to get out lately even to do the basics.  Mary Ann is now in bed, but she seems to be having trouble settling.

I am dreading the task of finding competent medical care, developing a good working relationship with him/her, and adjusting to whatever changes in medications and treatments may be involved.  It is hard to walk into a new situation in which I bring 23years of intense study on this particular patient, but those with whom I am sharing come with the confidence that they are the experts whose decisions must be accepted as the final word after a few minutes of conversation.  We have been spoiled by having doctors who have listened well and communicated well.

I am looking for some good to come from this transition.  It often happens that paths we would not have chosen bring us to a better place than we might have gone otherwise.  I can hope.

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 19, 2010

She Slept Last Night

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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I am not sure either of us would have survived another night of constant hallucinations.  She slept soundly last night.  This was my early morning, but it still felt good to have almost six hours of sleep.

Wednesdays are often very active days in our household.  Mary Ann slept through my time in the Spiritual Formation Group that meets here.  I got full advantage of another thought-provoking and nurturing time focused on the Presence of God in our lives.  The conversation was stimulating, meaningful and very engaging.

Bath Aide Zandra came shortly before the group time was concluded.  She had to awaken Mary Ann to do the morning prep tasks.  While Zandra was doing her task and our group was concluding, Parish Nurse Margaret came to spend some time with Mary Ann.

I chose to do the breakfast and pills with Mary Ann to maintain our routine.  Then as Margaret finished with Mary Ann’s toast, I started preparing for Kristie’s arrival.  Kristie does the monthly thorough cleaning, since I am all but useless at the task of house cleaning, especially the abhorrent task of dusting.  Kristie arrived just as I started the task of putting things away so that she could get to as many uncluttered surfaces as possible.

While Margaret stayed with Mary Ann and Kristie cleaned, I got a break to go and get more birdseed.  The little piggies are devouring seed at a phenomenal rate.  That is my part of the deal.  Their part is to provide us with hours of entertainment.  Yes, my feeding them is self-serving — but they do get something out of the deal.  Today is another rainy day, bringing lots of bird activity.  Unfortunately, there is evidence that the raccoon(s) have returned.  Unless a flock of birds came during the night and devoured a couple of pounds of seed, the cute but annoying little beasts are back.  Rather than messing with trapping, I plan to bring the feeders they bother into the house each night.  They can just argue with the possum over the seed in the platform feeder by the waterfall area.

Shortly after 1pm, a couple of folks came to talk about scheduling some paid time with Mary Ann on a regular basis.  This option came as a referral by Hospice Social Worker Kristin.  These folks are more reasonable than the Agency we use some times, and all of them are either licensed CNA’s or LPN’s who have had lots of experience with folks with Mary Ann’s sort of problems.  Glenna had served someone with Lewy Body Dementia and reviewed information about it on the Internet before coming to meet with us today.  We will begin with a Monday time the second week in June and just see what seems to be the most helpful.  She said that between her and three others like her, we should be able to get help on fairly short notice if needed.

Then at 2pm Volunteer Clarene came to be with Mary Ann for a couple of hours this afternoon.  At the same time former Parishioner Jay came by with a Latte for Mary Ann and coffee for me.  After we all talked for quite a while as Mary Ann was napping, Jay and I headed to PT’s just for some relaxed conversation (and more coffee).

Mary Ann spent a good deal of time today resting her head on the table.  When there was interaction, there seemed to be minimal evidence of hallucinating.  She napped in bed for a time this afternoon.  She was up for a bit when Clarene was with her and had a little more of the pizza I had gotten her for lunch.

After I returned we sat up together for a while, but she soon wanted to get changed for bed and lie down.  As always I don’t really know what to expect as to how the night will go.

As to the increase in the Seroquel, last night did not confirm that in Mary Ann’s case it increases hallucinations instead of reducing them.  The last increase many weeks ago produced a couple of bad days followed by some good days.  I would like for this increase now to produce some good days.  I am not even willing to hope that it will be so.  That sort of hope just sets me up for disappointment.  It is possible there will be some better days, but it doesn’t really seem very likely to me — possible, but not likely, that is tonight’s mantra.

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 19, 2010

2nd Tough Night and Morning

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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Last night was a little more constant than the night before in the rampant hallucinations/delusions/dreams mixed with reality.  This morning was at least as tough as yesterday morning.  She speaks clearly and with a strong voice.  She can get up and walk on her own, and I just hang on to the gait belt, helpless to change her behavior as we move this way and that.

She got up very early, when i could no longer coerce her into staying in bed.  After breakfast and pills, she was up and running for an hour or so.  Then she went into the bedroom, with me tagging along, and decided to get back into bed.  I, of course, was completely wasted from two nights in a row.

We had an appointment with a quality control worker from Wichita to evaluate the care we are getting from the state agency through the local County office.  For us that meant evaluating our Case Worker and Bath Aide.  She arrived a short time after Mary Ann had gone back to bed.

When the Evaluator arrived, we went into the bedroom to see if Mary Ann was awake enough to participate.  Mary Ann said she would participate but was clearly unable to do so.  I explained that we had been up two nights in a row resulting in her needing the sleep.  The Evaluator asked if she was sick.  Admittedly, I was baffled by the question since she was here to Evaluate the people helping us because Mary Ann is debilitated.  I told her it was the Parkinson’s and the Dementia that were at issue.

The Evaluator got the information needed for the form.  She was pleasant and understanding, even though her initial question had seemed pretty silly to me.  In the course of the appointment, she asked if I would be getting any rest.  I said that while I usually don’t rest during the day, I would have to do so if there was one more night anything like the last two.

After she left, I did some chores.  I continued to think about the option of my getting some rest during the day.  I chose not to do the variety of things that I would normally do with the break provided by her sleeping.  I went in and lay down to allow myself the option of getting some rest while Mary Ann was sleeping.  I actually slept for a couple of hours.

The negative of sleeping when Mary Ann is sleeping is that I lose time that is free for me to spend on things of interest to me, helping me keep my sanity and get some perspective on the daily struggles.  It is hard when all my waking time is taken by the caregiving tasks themselves.  This has, however, come to be a matter of survival.  If there is any hope that I can keep doing this while the dementia is in full swing, I have to get some sleep.  I am hoping that I can manage to continue to use at least some of Mary Ann’s rest time as my rest time as well.  I have to relent on my intention to keep nights for sleeping and days for waking.  I have tried not to reverse those two.  I no longer seem to have a choice on that matter.

At least once before, I had decided that it was time to look at facilities that might be acceptable for Mary Ann’s full time care.  I am again at the point of considering at least getting enough information to be able to know where to turn if things get too much harder here.

Hospice Nurse Emily came for her weekly visit this afternoon.  Mary Ann had just gotten up from her nap (as had I).  I tried to feed Mary Ann some lunch, but she just couldn’t handle even the chips and Pepsi.  She could barely suck on the straw enough to get the Pepsi into her mouth.  She only managed a very few chips when I was able to get them into her mouth far enough for her auto pilot to kick in and the chewing start.

Mary Ann’s Vitals were good.  Her blood pressure was 124/74.  That is about as good a set of numbers as a person could have — of any age.  Needless to say, next time those numbers could be half again as high or a third lower (as in the last two times it was taken).  Emily agreed to call about the progress on the possibility of having some paid help through Hospice so that I could count on a certain time for R&R each week. Emily did make that call, and one of the Aides is coming tomorrow to talk about the possibility.

Mary Ann was up for a while, but subdued, mostly with her head down on the table.  Eventually, she headed in to take a nap.  She was not interested in supper.  When Volunteer Barb arrived to spend time with her this evening, I went to check on Mary Ann to see if she needed anything before I headed out for a while.  She wanted to change into her pajamas and stay in bed.

After I returned and Barb left I checked again on Mary Ann.  This time she did want supper.  I got her a left over pulled pork sandwich and chips.  She ate pretty well and then went back to bed.  I have no reason to think that tonight will be any different from the last two nights, but I can hope.

I did phone the Neurologist’s office and leave a message reporting on Mary Ann’s behavior since we are trying to decide if the addition (three mornings ago) of the morning half tablet of Seroquel is helping more than it is hurting.  At this point, I am not sure what I think about that.  It does seem as if the consistent level of the hallucinations the last two nights suggests the medicine is having a negative effect.  Tonight may confirm that, or just sustain the confusion about what the medicine is or is not doing.

In the time away this evening, I read another section in the book on St. Patrick’s Breastplate, by Marilyn McEntyre, the verse that says, “Christ to comfort and restore me.”  There is a poem included in that section, a poem that is fitting for those with or without a religious affiliation.  The poem was triggered by seeing an acre of valuable, arable land sink into the river.  It is “The Slip” by Wendell Barry:

The maker moves – in the unmade, stirring the water until – it clouds, dark beneath the surface, – stirring and darkening the soul until pain – perceives new possibility.  There is nothing – to do but learn and wait, return to work – on what remains.  Seed will sprout in the scar. – Though death is in the healing, it will heal.

This is what she says in her commentary following the poem: “Three truths emerge conspicuously from this little passage that offer a durable way of understanding comfort and restoration: (1) there is nothing to do but learn, wait and return to work on what remains, (2) seed will sprout in the scar, and (3) healing and death are not always mutually exclusive.”

At this point in our journey, I am earnestly searching for the sprouts that are emerging in the scars left by the Parkinson’s and Parkinson’s Dementia.  Some are easily apparent, others still in hiding.

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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