October 24, 2009

Stuck at Home Today

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The toast was just out of the toaster with a little Mayo on it.  The Provolone and smoked turkey had come from the fridge.  The bacon was warm from having just been cooked to just the right crispness in the microwave.  The sandwich was still sitting in front of her, untouched, after I had made some more bacon and toasted a slice of bread, topped it with butter, peanut butter and jelly for my own supper.

I asked what was wrong — why she had not touched the sandwich sitting in front of her.  She said it was frozen.  There was another time not too long ago when she said the same thing about a sandwich I had made for her.  Of course I did the opposite of what should be done when hallucinations mix into reality.  I complained in frustration as I took it to the microwave to heat it up for her.  I complained that I have no power to fix what isn’t there — it was impossible for it to be frozen.  When I asked what led her to believe it was frozen, she said there was ice on it — again, impossible.

While I should be past letting these things cause frustration, it is true that it is impossible to fix what doesn’t exist.  It is already using up all my coping skills dealing with what is real.  Dealing with the challenges all day and all night (sometimes) creates a very thin veneer of equilibrium.  My frustration came and went in moments, and Mary Ann ate about a quarter of the sandwich — followed by a cookie (no wonder she stays so thin even with trips out for ice cream).

Today also included lots of trips caused by some intestinal activity — not always making it in time.  Gratefully, the disposable underwear makes that occasional incontinence easier to handle.  This was a day the role of waste management was exercised.

One of the complications was that the esophageal spasms flaired up today.  When they come, there is much discomfort that lasts for hours.  This attack lasted most of the day.  I have been to the Gastroenterologist and been tested in every way known to humankind.  There is pretty much no real explanation and no treatment.

One of the routine challenges of any Caregiver is the need to continue to deal with the needs of another, no matter how small those needs may be, even when the Caregiver is sick and in pain.  It just comes with the territory.

Since last night was not a particularly good one in terms of uninterrupted sleep, we were both tired.  As a result, Mary Ann napped for a long time, and I vegetated, trying to ride out the spasms.

Mary Ann is in bed now and seems to be sleeping.  I will, hopefully, not be far behind.  I am sure she will need one or two snacks during the night since there was little consumption of food today.

Two updates:  No raccoon visitation last night either.  We will see what tonight brings. The other update is that I have managed to avoid any exercise walking the last two days.  Tomorrow is another day.

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.

 

October 16, 2009

Quality of Life Is a Prime Consideration

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Her head is hanging over the side of the transfer chair resting on the table next to it.  I suggested that she go to bed, but she insisted on staying there for another half hour.  That half hour will be up in a few minutes.  I wlll take a break and get her into bed in a moment.

After a restless beginning last night, sleep finally came and stuck around.  There were only a few commode trips after she finally settled.  She chose to sleep in until about 9:45am.  That rest seemed to help her alertness and responsiveness.  She has often put her head down on the table today.  I think the restless nights and early mornings have finally caught up with her.

I am heading off to get her to bed now.

She is in bed and already appears to be asleep.  It is too early to tell, but I certainly hope she sleeps well.  She needs the rest.

When the phone rang this morning it was the call I was expecting from the Cardiologist’s Nurse.  She had in hand the reports from the echocardiogram, the carotid sonogram and her blood work.

The call was another encounter with realities that are not visible.  Probably the most serious concern is the increase in the severity of her Pulmonary Hypertension.  That is the disease that took the lives of those who had taken the diet medication called Phen-Fen (sometimes designated in reverse, Fen-Phen).  Pulmonary Hypertension has been a part of the array of Mary Ann’s diseases for the last two to three years.  It is a funcion of the high blood pressure, which is, of course, raised by the Midodrine.  Any treatment would involve medications to reduce her blood pressure, bringing on the return and probably increasing the frequency of the fainting spells.

As last summer’s posts reveal, the fainting spells lower dramatically our ability to function.  Gratefully, both Mary Ann’s Cardiologist and her Neurologist understand the dilemma well and respect our decisions on how to proceed.

As I mentioned a number of posts back when reflecting on the report we had received on her blood work, her kidney function also has declined in the last six months.  She is now only one point away from Stage 4 (of 5 stages) of Chronic Kidney Disease.  A couple of years ago, her Nephrologist agreed that any treatment would lower her blood pressure, creating the same problem as the treatment for the Pulmonary Hypertension.

The Cardiologist’s Nurse said that the lesion in her left Carotid is still not past the 50% mark, which is the point at which the need for surgery comes into play.  She mentioned that there is a build up on her right side also.  I don’t remember whether that has been mentioned before.

The Nurse confirmed that there is leakage in more than one heart valve, including the Mitrovalve.  That regurgitation seems to have worsened some, but the language of the tests was not clear on that issue.  At our last appointment with the Cardiologist six months ago, the leakage was not bad enough for the surgery option to be up for consideration. There are also enlarged chambers in the heart, especially the left Atrium.  That problem has worsened.

All of the above has been factored into our consciousness at some point already in the past.  Hearing the results of the tests bring it all to the surface.  My questions always probe the rate of change.  This set of test results seem to indicate a more pronounced decline that in the past.

I plan to fax the Neurologist to probe further any treatment options for the fainting that might not raise the blood pressure.  At one point he mentioned an off label use of a drug called Mestinon.  The Cardiologist was unfamiliar with it and unwilling to prescribe it at that point.  I may try to get them to talk with one another about that or other options.  Getting doctors to talk with one another is not always an easy thing to accomplish.  They are both good doctors — maybe it can happen.

On the matter of the quality of life and the health of this Caregiver, the power of the Alien possession is now getting scary.  This is the Alien from planet Pedometer Prime who, as in the movie the Body Snatchers, is trying to change me into some sort of walking, exercising pawn.  This will frighten you.  Mary Ann and I made an afternoon run to the store for something.  Afterward, I offered to get some ice cream.  We went to Sheridan’s Frozen Custard for a what they call a concrete.  The one of choice is made with chocolate frozen custard with pecans mixed in.

Here is the terrifying development.  As we approached Sheridan’s, the Alien simply took possession and overpowered my will to eat ice cream.  Those of you who know me well (or have been following this blog) understand just how horrible this was.  I got Mary Ann a concrete as described.  Then the Alien took over the car and drove it to Cedarcrest where I walked the path while Mary Ann ate her treat.  It is a miracle we made it safely.  I certainly had no control over that car or, at the very least, we would have veered left at 17th and headed for Maggie Moo’s.

If that is not horrifying enough, the Alien had already forced me out to walk in the neighborhood early (for me) this morning while Mary Ann slept.  Keep alert, you never know when one of those Aliens will try to take you over too!!

By the way, Mary Ann actually said she liked what I made for supper tonight.  There were a couple of pork chops in the fridge recently thawed and needing to be cooked.  We had some red potatoes, onions and fresh broccoli in the there also.  I cut up the potatoes and veggies and put them on a foil covered cooking sheet (I hate cleaning pans).  We had some Hendrickson’s dressing and marinade that we have used in the past and liked.  I tossed the veggies in it.  Then to make the food preparation easier, I put the pork chops in a baking dish and covered them with the same marinade.  Both dishes went in the oven (375) for almost an hour.  I really liked the meal, but then I like everything.  Mary Ann only ate the meat, but volunteered at one point that it was good.  There is such a feeling of victory when something has passed muster with those finicky taste buds!

Just in case the Alien attacks again in the morning, I had better settle in for the night and get 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.

 

October 15, 2009

Can I Keep her Awake Another Day? Should I?

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , |
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I think not!  We made it through today, but it took much coaxing and insisting and endless activity. She did not sleep very well again last night.  There were about as many trips to the commode, changes in position, drinks of water as have been so for the last few nights.  She was up at 7am, laid back down while I showered and got up for the day immediately thereafter.

I got her hair washed, got her dressed and delivered her to the circle meeting well before it was time to begin.  On the way home after the meeting, I suggested getting a movie or two for the late afternoon or evening to keep her awake.  When we got home she wanted to nap.  Since it was lunch time, I was able to keep her up for that.  Then she wanted me to leave her home while I took the car in for an oil change.  I thought about doing so, but since she was still up we just got in the car and headed to the Honda place.

When we got home after that, the television kept her attention for a while.  We ate supper,  watched one of the movies, and now she has just gone to bed.  My goal has been to keep her up during the day until finally she will sleep soundly through the night (with just a few commode trips) and we can return to a more manageable sleep pattern leaving both of us better rested and reducing the hallucinations.

Colleen commented on last night’s post: “Your comment about sleep reminded me of children.  The more tired they are, the more hyper they get, and the less likely they are to sleep.”  Before I read that comment, I had decided that tomorrow, if she wants to nap, I will not try to keep her up and busy, but just let her sleep.  Colleen’s observation may very well explain what is happening.  Keeping her up may actually be making it harder for her to sleep through the night. It is far too soon to determine if this will be a sleepless night or a sleep-filled night.

By the way, supper tonight was a treat for both of us, even though I did the cooking.  It was a meal simple enough even for me to prepare. When Edie came to stay with Mary Ann on Sunday (providing a meal, as she always does), she mentioned that they had just picked many green tomatoes.  We sent with her Mary Ann’s Mom’s recipe for green tomato relish.  I mentioned that it made the best glaze for a ham known to humankind.

Guess what was delivered to our house last evening while I was at the local Audubon Society presentation?  There were a couple of jars of freshly made green tomato relish and a huge slice of ham about an inch thick, ready to be cooked.  I wrapped a couple of sweet potatoes in foil and baked them until they were soft and moist, ready for the butter and brown sugar, spread the relish on the ham and broiled it (per instructions on the wrapper), opened and heated a can of peas, and the feast began!  The only moment of concern came when the relish under the broiler began to smoke.  I had visions of alarms sounding and fire trucks gathering.  Gratefully, the newly cleaned smoke detector was no longer too sensitive [see earlier post].

The movie we rented was The Soloist.  It was is engaging account of someone who managed against seemingly insurmountable odds to make music.  While our situation is far less dramatic and hardly compares to what the character in this true story encountered and, apparently, still does, the movie encourages the idea of living meaningfully, no matter what.  That is precisely the goal toward which we are drawn.

On that note, the Alien presence from planet Pedometer Prime had its way with me again.  I walked once outside at Cedarcrest and once in the mall while Mary Ann was at her Circle meeting.  Then came a powerful attack by the Alien.  Before it was over, I committed to a five week exercise and weight reduction program at Rebound Physical Therapy.  This lack of sleep must be getting to me also.  My resistance is down.  There is confusion from synapses that have not had time to connect as they do during that deep sleep that is so important to us.  Have I finally simply gone completely mad!!

One last note:  She has already been up for a couple of drinks of water, saltine crackers and a snack-sized container of applesauce.  Is it possible that she can have still another restless night?  The answer to that question will come soon enough.

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.

 

September 24, 2009

Embarrassed!!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , |
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Could our timing have been worse??  I think not.  We rolled up the sidewalk just in time for the pastor to open the doors for the pallbearers, readying themselves to carry the casket to the coach. The family was lining up behind the casket.

We just scooted in the open door, past the pall bearers and the family to the other side of the lobby as the funeral home staff ushered out of the Nave of the church those who had come to attend the funeral.  It was the epitome of bad manners.  Sometimes it is not better late than never!

Actually, I pretty much expected that we would embarrass ourselves when we left the house.  The funeral was at 10am.  We left the house at 10:20am with about a ten minute drive to church, depending on the stoplights.  Mary Ann had to take some medicine before we headed toward the door.

The decision was either to embarrass ourselves by arriving at the end of the funeral, or not going.  Mary Ann’s bath aide has a schedule of clients to see each day she works.  It is not a simple matter to just ask that she come earlier, throwing all her other clients off their schedules.

When there is a chronic illness like Parkinson’s that has entered the family, there are consequences.  Among them is the loss of the ability to make and keep plans, to accommodate to external demands.  The disease often rules the schedule.

Having served as Pastor of the congregation for over twelve years, I had known the deceased and family for a long time.  There had been some very challenging times in the family’s story during those years.  I was involved in that story.  This was a chance to see some of the family who had come from very far away.  I could have written a note explaining why we couldn’t make the funeral.  That just did not seem okay to me.  Charlotte had served as a Volunteer with Mary Ann, I had confirmed some of the grandchildren.  I had done a couple of weddings for the family.  The connection seemed too strong to accept that we couldn’t get to the funeral.

I decided that in spite of behaving badly by coming in at the end of the funeral, and the embarrassment that would come with it (embarrassment is a most hated enemy to me), I would not give up the chance to have a few minutes with members of the family.

We had had some practice with this sort of embarrassment when we decided some time ago to go to a morning worship service instead of the evening service. That Sunday morning we arrive in plenty of time to attend the 11:30am service.  The service, of course, is and always has been at 11am.  We had to roll past a group of folks standing on the sidewalk by the door to church.  They had gone to an earlier service and were just socializing as they were heading to the parking lot.  Again, I knew we would be late, but I wanted to hear a newly commissioned Deacon preach (he was great!).  We had a commitment that evening that would not allow us to attend the evening service.

Chronic illness has consequences in day to day life.  Sometimes embarrassment is one of them.  As I have mentioned before, eating in a restaurant often provides opportunity for embarrassment as food often ends up where it is not intended to go.  Using public bathrooms always provides opportunity for embarrassment as I have to find someone to watch the door of the women’s restroom while I help Mary Ann, fearing all the while that someone will come charging in, horrified to see a man in the women’s restroom.

One of my personal challenges is to refuse to give my hatred of being embarrassed the power to control our choices.  We need to be out with people.  One thing our circumstances have taught me is to be less judgmental of others.  Who knows what they are going through, when they do things that seem to be in bad taste or thoughtless or inappropriate? Who knows what they are going through?

Embarrassed?  Yes!  But we’ll live.

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.

 

September 21, 2009

We Have Food!!!

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Maybe that is a little dramatic — three exclamation points — but we do now have a number of new items of food in the freezer.  While our Daughter, Lisa, stayed with Mary Ann for the three days I retreated to Oklahoma, she made lots of things that are within my cooking comfort zone and put them in the freezer.  She wrote the preparation directions on pieces of paper and put them with each item.  Gratefully, they are mostly the kind of directions that say, thaw, cook in oven for an hour at 350 degrees.  I can handle that!

Pete and Carla stopped by with a meal this noon.  They are very thoughtful folks.  I was sorry to miss seeing them since I was at the lake while Volunteer Jan spent time with Mary Ann. Jan and Mary Ann seem to enjoy each other’s company.  This afternoon Elaine came by, picked up Mary Ann and took her to the Quilt Show.  Mary Ann loved making quilts for a number of years.  She especially liked piecing the tops together.  She spent two years hand stitching the quilting on her first quilt, a queen sized sampler quilt.  After that, she took them to be machine quilted once she got the tops pieced. It has been hard for Mary Ann to accept the loss of the ability to make quilts.  After such a busy day, Mary Ann crashed late this afternoon, so the evening service at church was not an option for us.

This morning’s time at the lake provided a couple of interesting treats in observing wildlife.  The first is a repeat of an encounter I had a few weeks ago.  Again today there were two Ospreys sailing overhead.  One came right over the car, so I got a very good look at him through the binoculars.

I made my usual visit to the Delaware Marsh, which now has very little visible water in it.  The area that I walk has one large puddle left.  As I approached it from a distance, walking a on tall ridge alongside the marsh, the water in the puddle seemed to be almost boiling with activity.  When I focused the binoculars on the mud sided puddle, it was boiling, not from heat but from the movement of snakes, maybe a dozen of them. They were twisting and turning rapidly, in constant motion.

After watching a while, it became apparent what was going on.  The water had dried up in most of the area, leaving that large puddle as the last, very confined, place where the frogs and fish were trapped.  While I am not absolutely sure about the fish, I could see the frogs jumping out of the water, flying into the air, with snakes in speedy pursuit.

Some of the snakes were pretty large, at least two or three feet long — some probably longer.  The snakes began slithering off in the mud and marsh grass as I approached.  One large snake and one medium sized snake remained in the mud at the edge of the water even though I was not far away.  As far as I can tell, looking online, they were white bellied or yellow bellied water snakes.  They did not have the telltale triangular head of a venomous snake.  While I am not particularly fearful of snakes, I kept my distance.  The binoculars provided as good a look as I would get even if I tried moving closer.  I am sure they would have moved away quickly if I had climbed down the ridge into the marsh.  My visit to that puddle probably provided a stay of execution for some frogs and fish.  I doubt that the stay will be for long.

Uh-oh.  There seem to be signs of restlessness being revealed by the video monitor.  I hope Mary Ann sleeps well tonight since tomorrow includes two different Sonograms, heart and carotid artery.  We always hope for no change in the condition of both.  Blocked heart arteries, some weakened heart muscle and a dented and rough surface on a large lesion on one side of her carotid artery keep us aware of the harsh realities of her condition.

Each day is a gift!

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.

 

September 15, 2009

Caregiver’s Life Preservers, Vol. 3

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

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

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

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

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

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

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

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

 

September 10, 2009

Caregiver’s Friend: Spray and Wash.

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We splurged and ate at Texas Roadhouse.  It is not exactly a gourmet restaurant, but the beef is tasty and prepared well.  Most of all, those sweet potatoes are spectacular.  They have managed to make a veritable health food into a diabetic’s nightmare.  Gratefully, neither Mary Ann nor I have added diabetes to our collection of ailments.  Frankly, given the amount and regularity of our ice cream consumption, I  have no idea why we haven’t both joined the ranks of those with type II Diabetes.

Mary Ann chose the Texas style beans as her second side.  She had white slacks and a turquoise and white top. The combination of twenty-two years of Parkinson’s Disease, a light stroke that effected her right side, and the Parkinson’s Disease Dementia, a Lewy Body Dementia, has made negotiating eating utensils very difficult.  Both the stroke and this particular version of dementia affect the portion of the brain that organizes things in relationship to one another, spatially.  As a result, getting those beans out of that little bowl and into her mouth was no small challenge.

The rule when we go out is that Mary Ann does everything herself, unless it is absolutely impossible for her.  That is her rule.  She will often allow me to cut something into small pieces if it doesn’t come apart easily using only a fork.  She did allow me to cut the meat for her.  I could do that discreetly by reaching across the table.  Feeding her the beans would have been out of the question.

It is interesting to me that she seems not to be at all self-conscious about the food moving out of the dish or plate on to the table, where she chases it to try to get it on to the fork or spoon.  The problem with dexterity and the spatial issues along with her penchant for shifting to the left, with the food then traveling over her lap to get to her mouth, resulted in lots of deposits on her clothes the color of the sauce on the beans.

As soon as we got home, the spray and wash came out and a load of clothes went in.  (I just had to take a dryer break — it is all folded now.) There is seldom a load of wash that doesn’t include a few items sprayed with Spray and Wash.  The Plavix and aspirin combination that Mary Ann takes to help prevent another stroke thins her blood enough that there is often some oral and nasal bleeding at night.  Sheets are almost always sprayed before going in the washer.

I haven’t asked the online group of Caregiver Spouses how many others go through large quantities of Spray and Wash, or something like it.  I suspect that the few hundred in that group contribute a great deal toward the job security of those who manufacture it.

Just as a follow-up to the smoke alarm fiasco on Sunday morning, the security company phoned to say that there will be no charge for the service call coming this Friday.  They determined that our system is so old (almost twenty years), and we have paid for it for so long, that they will upgrade the system at no charge.  That is good news.  I am suspecting that the reason the signal was not received by the dispatcher when the smoke alarm went off was that the system is obsolete.  I am not so naive that I did not check and determine that there will be a contract available that day for me to sign, raising the monthly fee to provide ongoing maintenance.  I should still have the choice that day to decline the offer.  My expectation is that we will still receive the free upgrade.  We will see.

Last night was another restless night.  Here is hoping for a good night’s sleep tonight.

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.

 

September 5, 2009

Julia Childs I Ain’t

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I thawed the roast in the microwave and cut it into two pieces to be sure it thawed completely and would fit into the crockpot.  Then I heated the large pan to brown the meat in olive oil.  As usual, the stove and the floor in front of it glistened with the olive oil splatter before all sides of the the two pieces of beef were browned. 

I put the beef into the crock pot with some red wine and a packet of Onion soup mix and turned it on high.  Then I browned lots of onions and some garlic in the same pan and set it aside to put in the crock pot later. 

After a trip out to Bobo’s Drive-in and an enjoyable visit with the bearer of some chocolate (local source for chocolate is named Audrey), I got to the business of getting the veggies prepared and into the pot.  There were carrots, potatoes, some celery, the onions and garlic from earlier to be added.  After that had cooked a while, just for the heck of it, I tossed in a can of corn and a can of green beans.  I have trouble knowing when to stop when making these sorts of things.  I am of the school that says, whatever the ingredient, if some is good, more is better.  I have trouble with pots that seem consistently to be too small.  I did have enough sense to add a second packet of onion soup mix so that here would be enough seasoning to handle such a large quantity of food. 

The process began around noon.  The last of the veggies went in some time before 5pm.   It was about 7pm when we sat down to eat.   The potatoes still weren’t done.  Yes, I cut them into fairly small pieces so that they would cook more quickly. 

Needless to say, Mary Ann did not eat much of my culinary delight and needed a snack before bed (the usual little Snack Pack container of tapioca pudding).  The hallucinations are now interfering with her settling in and going to sleep.  It may be another long night.

By the way, I turned the crock pot on high after supper, and a couple of hours later it tasted great — to me.  I suspect Mary Ann will not be interested in trying it again.  That is our usual pattern. 

I guess it is a combination of laziness, lack of experience in cooking, and the disincentive of Mary Ann’s pretty narrow range of what is acceptable to her to eat that fuels my failure to launch in providing regular nourishing meals for Mary Ann.  Today is probably the first time in a week or so that I have attempted to do anything other than make sandwiches, take her out, give her what she brought back from the last time we went out, or eat the food that folks sometimes bring over or provide for us. 

I have to admit, that it continues to be a source of shame and embarrassment to me that I have not done better at fulfillling my Caregiving duties in the area of food preparation.  The food that I do prepare tastes good to me.  I love leftovers and eat as much as I can of what we have.  I  am over twenty pounds overweight — a lot for this five foot, six inch frame.  The freezer is full of food that I will eat and Mary Ann will not.  What I make is usually, as was so today, crammed full of veggies and all cooked together.  It is just not appetizing to her. 

Actually, I have no excuse for not doing a better job in this arena.  Our close friends in Kansas City include a husband caring for his wife with ALS.  Charlie does a great job of providing a variety of tasty and healthful meals.  I think Marlene would agree, other than that he doesn’t always listen to her instructions as he is cooking.  I am a reasonably intelligent person; I can read; I can (reluctantly) follow directions — as in recipes.  I have watched and enjoyed lots of cooking shows over the years.   There were Francois Pope (Chicago area), The Galloping Gourmet, The Frugal Gourmet, Justin Wilson — The Cajun Cook, Yan Can Cook, Lidia, plus all the recent and current Food Channel cooks.  You would think I might have absorbed something.  All I seem to have retained from all of it is a voracious appetite.  The cooking looks like fun, but the eating is funner!

Oh well, no one said it would be easy!  As long as there are Glory Day’s pizza by the slice, Long John Silver’s, Bobo’s, McFarland’s, The Classic Bean, Copper Oven, Perkin’s, Jersey Mike’s, New City Cafe, Panera’s, Steak and Shake, Subway (unless they keep showing that annoying commercial with the out of key singing), and a cluster of ice cream and frozen custard places, Mary Ann won’t starve (at least until we run out of money).   

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.

 

August 29, 2009

Leaning to the Left

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , |
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“Will you push me up?”  Mary Ann asks often, especially when we are out in the car.  When she asks, sometimes her head is almost completely horizontal over the console between the seats.  I usually push her up before it goes that far, even if she hasn’t asked.  I have to be careful since sometimes she is napping in that position and doesn’t want to be moved.

It happens sometimes when sitting in her chair in the living room. Especially when she has not had enough sleep, or when she shifts into the non-responsive mode, she will lean forward or in whatever direction there is something on which she can rest her arm and head.  When she starts napping in her chair, I offer to take her into the bedroom so that she can lie down.  It is not unusual for her to prefer staying in the living room if she wants to avoid taking a long nap.

When she is awake and leaning, it is always to the left.  There seems to be a natural affinity for moving to the left.  When Mary Ann is sitting at the table eating, almost without fail after a while she will be sitting with her knees and feet off the left side of the chair, eating over her lap and the floor, rather than the table where her plate is located.

It is hard for me to see that and not move her back to facing the table.  My response is not just some compulsive need for her to be sitting a certain way.  My need to move her back to facing the table comes because when she is facing to the left, the food that falls out of her hand ends up on her lap and the floor.  I then have the task of cleaning it up, hopefully before anything gets stepped on.

Mary Ann’s turning to the left at the table has been a bone of contention between us.  Sometimes she gets angry with me when I move her back to eating over her plate.  I complain about her eating over the floor making it more difficult for me because of the clean up.  I am not the noble self-less uncomplaining caregiver.

What has helped me in accepting the leaning to the left and at least trying to be less grumpy about it is the discovery that very many of the others who are Caregiving Spouses of those who have some sort of Dementia with Lewy Bodies describe the same behavior.  When someone in the online group mentioned that her Loved One couldn’t hold his head up, many responded with the same problem and still others described the leaning phenomenon.  Many of those who have been dealing with Lewy Body Dementia struggle with the same issue of trying to deal with the effect of the Disease on their Loved One’s ability to maintain a sitting up position or keep his/her head erect.

One online member suggested using a chair with arms at the table.  That suggestion is a good one.  The disadvantage is that our space is so confined that getting her in and out of an arm chair at the table is difficult.  It may, however be the lesser problem.

As I have mentioned many times before in these posts, it seems to help when a frustrating behavior can be explained by the disease we are battling.  It moves the behavior from what seems willful to something that is completely involuntary.  It moves the problem to simply another area needing a creative solution.  By the way, when I make observations on behaviors of Mary Ann that are frustrating to me, I become very grateful that Mary Ann is not writing blog posts on the things that I do that irritate her.  You think my posts are sometimes long!!  She could write volumes.

Tomorrow will be an early day since we are going to try to attend the Annual Parkinson’s Symposium sponsored by the University of Kansas Medical Center in Kansas City.  We will see how the night goes and whether or not we can manage a very early starting time.  We have to allow for an hour and a half travel time.  My hope is that we can at least make it for part of it, and that the information will be helpful.

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.

 

August 10, 2009

Some Days are Frustrating

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , , |
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It seems so unfair to complain about frustrations with someone who is suffering from such a terrible cluster of diseases, Parkinson’s Disease, Parkinson’s Disease Dementia, and heart disease on top of all that.  My aches and pains and various annoyances are tiny by comparison to Mary Ann’s challenges.

Someone in the Lewy Body Dementia Spouses online group replied to me this way [I am paraphrasing]:  You may not have the disease, but, as the primary Caregiver, you suffer from it too.

Those of you who know Mary Ann love her and respect her very much.  Those who know her best know that she has a chip on her shoulder that refuses to allow her to let anyone push her around.  It is one of the things that drew me to her and one of the things that drives me crazy!

With this complex and maddening combination of symptoms that come and go and come again, sometimes in minutes, dealing with the ordinary daily activities can be utterly frustrating.

Mary Ann can move from concluding something completely untrue and impossible in her less lucid moments, seeing things that simply are not there, to being completely clear in her thinking, remembering events more accurately than can I. One result of the times of dementia and lucidity being interwoven together, is that I am not sure whether to take seriously what she is saying or not.  I am not sure if she is confused about something, unaware of what she is really saying or doing, or she is willfully exercising pushback, proving again that she can do what she chooses no matter what effect it has on me.

Last night was a restless night.  No amount of begging her to stay settled in bed could keep her from getting up.  Again, there were multiple trips to the commode, even when there appeared to be little or no actual need to use it.  There were changes in the covers, shifts from facing one direction to facing another, need for a snack.  Then this morning she decided to get up at 6:45am to eat and take pills.  Normally, she sleeps until 8:30am or 9:30am.  I was up with her most of the first half of the night.  There is no point in my trying to get to bed and to sleep during her restless times.

After pills and breakfast she wanted to watch television.  Once she is up, I have to be there with her, awake and accessible to her since she gets up and walks, subjecting herself to the likelihood of a fall.  Her schedule determines mine.  She reluctantly agreed to lie back down in bed.  Gratefully, she slept for almost three hours, allowing me to do the same to try to make up for a very sleepless night.

The frustrations continued with our at least daily battle over what to eat.  There were available to her, chicken salad that I had made, fresh sliced smoked turkey and provolone cheese, some lasagna from the freezer, some roast beef and vegetables from the freezer, eggs, bacon, fresh strawberries, blueberries, cantaloupe. seedless white grapes.  I spent at least forty-five minutes trying to get a response on what she would eat.  She came out to the kitchen in her search for something else different from what I had offered.  I asked about the lasagna, which she had liked very much.  She said it wasn’t as good the second time.  That one pushed me to the edge.  I asked again about the smoked turkey.  She said no.  Then, after almost an hour of this, she mentioned salami.  We had gotten that when we got the turkey at the store. It was hard for me to accept that it took that long to find our way to something she was willing to eat.

My assessment of her goal was that we go out to eat.  Since we can’t afford to eat out every day, that goal is frustrating to me.  We had gone out the last three days.  To waste all that food in the refrigerator because it just didn’t measure up to the wants of the moment is an intolerable thought to me.

The rest of the day was spent watching reruns of the most depressing and demoralizing accounts of the criminal behavior presented in vivid detail in a marathon of one of the incarnations of the Law and Order Series.  Since the house is small and I need to be very accessible to Mary Ann, it was hard to avoid at least seeing portions of some of them.

We did manage to get out for a while (a very hot day) to get some ice cream.  Then there was church tonight.  We had some freshly made food brought over to the house by a parishioner and friend later in the afternoon.

In writing this post, I have risked diminishing Mary Ann by speaking so candidly about my frustrations.  She has reason enough to be frustrated with me at least as much as I am with her at times.  She does not have the luxury of writing out those frustrations for others to read.

As unfair as it is, this is one of the ways I process my frustrations so that I can maintain my equilibrium as I serve her needs all day every day — and night.  My hope is that by putting my frustrations into words here, I can be a better husband and Caregiver to her for as many years as we have left together.

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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