December 19, 2009

Cursed by the gods of cooking!!

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
[2] Comments 

What terrible thing have I done to anger the gods of cooking so??  Here is a quote from last night’s post: “As I have said far too often, I am out of my comfort zone when trying to cook.  That is why the Anniversary Dinner tomorrow is a carry-out special.  It does demand cooking the Prime Rib for an hour, and reheating the side dishes that came with it.  I should be able to handle that much, but who knows how it will come out.”  The last clause was prophetic.

Last night’s post also noted that the Honey Crunch Pecan Pie had sloshed a couple of times leaving pools of surgary filling on the bottom of the stove.  Why do I suspect that everyone reading this who has ever cooked already knows what happened this morning.  Here is the what I brought home from the Brick Oven Restaurant for our Anniversary Celebation dinner with three couples who drove over from Kansas City:  five pounds of Prime Rib, Baby Red Potato Cheese Bake, Tasso Corn Bake (a signature dish), Au Jus, Creamy Horse Radish & Dinner Rolls.

All I had to do was finish cooking the Prime Rib for an hour in the oven and reheat the side dishes in the microwave.  You know what happened when I turned the oven on to preheat it to 275 degrees.  Yes, the smoke started pouring out of the oven vent.  It wasn’t just a little bit of smoke, but thick smoke as in burning sugar.  Again, I had to pull out the sheet entitled “How to Cancel a False Alarm” just in case the smoke detector went off.

It is good that it was not seven degrees with a wind chill outside since I had to open every window in the kitchen, the front door, open the door to the garage (and open the garage door itself).  Of course, I had no choice but to put the Prime Rib into the smoking oven, since there would soon be eight of us sitting at the table intent on eating an Anniversary Dinner. One of the side dishes managed to bubble over in the microwave to add insult to injury.

Then there was the award-winning Honey Crunch Pecan Pie for dessert.  After all the challenges getting it cooked last night, it actually looked pretty good.  And, it would have been perfect if it were called Honey Crunch Pecan Upside Down Cobbler!!! It looked like it was done.  It didn’t jiggle when I moved it.  When I cut it and tried to get a piece out to put on the dessert plate, what ended up on the plate was a dark brown heap of goo with nuts in it and pieces of crust trailing through it. That piece and every one after it came out the same way.

We squirted Redi-Whip (the one that is cream, not oil) on each piece and ate our dessert.  There was some sympathy applause in the form of verbal commnets on how good it was.

I will admit publicly here that twice in the course of getting the rolls heated and in the basket, some of them fell on the floor.  I had just cleaned that floor with my Swiffer Wetjet mop shortly before the Kansas City Crew arrived.  I am sure it was completely sterile.  There were two different witnesses, one to each drop.  They each promised secrecy, each unaware of the other.  Needless to say they were both guys.  We grew up eating dirt on occasion — so what’s the deal?

The good news was that the Prime Rib was spectacular, the side dishes were each distinctive and wonderful tasting.  We had a great conversation, and in spite of looking less than appetizing, the Honey Crunch Pecan Upside Down Cobbler really tasted as good as would be expected for an award-winner.

Will I ever do such a thing again, invite people over for a meal at our house? Unless I can figure out what I did to anger the gods of cooking and atone for my sins, I think not.  Hold it!!! Our Son and Daughter, their Spouses and our Grandchildren will be arriving at our home Sunday late in the morning so that we can have Christmas Dinner together.  There will be nine people!  I am preparing that dinner!  Maybe they won’t read this post before Sunday.  Who knows what I can do to ham steaks, cheesy potatoes, grape salad, garden corn — and half of a Prime Rib roast left over from today (it was huge).

No, I will not be making Rosalie’s Honey Crunch Pecan Pie!!!! (I may, however have a large glass of the secret ingredient in that pie — check last night’s post.)

Mary Ann was quite subdued today.  She seemed very tired.  It was hard for her to get to sleep last night.  She seemed excited about today.  I am not sure if she engaged in conversation when I was out of the room, but it did not appear to me that she was very responsive and communicative.  She went to bed at 6:30pm after napping with her head on the table in front of her transfer chair for an hour or so before then.  I hope she perks up by Sunday when the kids are all here.

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.

 

December 18, 2009

Rosalie Seebeck’s Honey Crunch Pecan Pie

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , |
1 Comment 

Why??  What possessed me to try this?  If I needed to make a pecan pie, I could have just used the recipe on the bottle of Karo Dark Syrup.  Why on earth did I have to make Rosalie’s Honey Crunch Pecan Pie??  Maybe it was the secret ingredient, the tablespoon of Bourbon that intrigued me.

Rosalie won the National Crisco Bake-Off in 1989 with this pie. The prize was a $10,000 new kitchen.  Rosalie is a member of the congregation in Bethany, Oklahoma, of which I was the Pastor for about nine years.  Not only was that congregation a warm and loving crew who taught me how to be the pastor of a congregation (up to that point I had served as an Associate Pastor with a limited portfolio), but Rosalie was a member.  We relished those times we were invited over to eat at their place.  I remember once paying $45 for one of her Honey Crunch Pecan Pies at a fund-raising auction.

Anyone can find the recipe.  I just Googled “Rosalie Seebeck’s Pecan Pie.”  While the recipe is easy to find, the secret to making it as Rosalie did, makes it impossible to match perfectly.  Rosalie grew up on a farm.  She was the oldest of a number of children, so she had to learn to cook.  Her farm years had impact on that pie.

Oklahoma City is an interesting place.  It is an overgrown town.  When I first arrived at the church, across the parking lot was a small field with horses in it.  Lots of folks had gardens and livestock.  Ray and Rosalie had chickens and bees and a yard filled with pecan trees.  She carried on the plane to the contest in California, eggs from their chickens, honey from their bees.and pecans from their trees.  Oklahoma pecans are small and especially flavorful.

This pie is made in stages, with chopped pecans in the filling, followed by pecan halves in the next stage.  The pie is cooked for fifteen minutes, then the foil around the crust is added.  After another twenty minutes, the coating for the larger pecans is made, the pecans stirred in until they are fully coated, then spread on the top of the pie.  Then the pie goes back in for more cooking.

There is filling and sugary coating in pools on the bottom of the oven, smoking so much I pulled out the Security System information in case I had to call off the fire department.  Gratefully, the smoke detector did not go off — nor was the pie itself burned.  I will be anxious to see how it came out when we cut it for the crew that is coming to the house to help us celebrate our anniversary tomorrow.

This morning I put a large pork loin in the crock pot after browning it.  Then came the onions, apples and sweet Bavarian sauerkraut.  It cooked on low for about seven hours.  I loved it.  Mary Ann did not.  She used to make the same thing the same way.  She used to like it.  That she will not eat what I cook hurts my feelings, but by now, I should know better than to expect that to change.  I made her a sandwich so that she would have something in her stomach for the night.

As I have said far too often, I am out of my comfort zone when trying to cook.  That is why the Anniversary Dinner tomorrow is a carry-out special.  It does demand cooking the Prime Rib for an hour, and reheating the side dishes that came with it.  I should be able to handle that much, but who knows how it will come out.

Then the next day will be devoted to preparing side dishes that will accompany our early Christmas celebration dinner on Sunday.  This cooking business is getting completely out of hand!

It is getting late.  Mary Ann seems to be sleeping at the moment.  It took her a long time to settle tonight.  Hopefully, there will be some sleeping for both of us before the morning chores begin.

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.

 

December 16, 2009

Shopping: Groceries and Christmas Gifts

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

She knew exactly what she wanted us to make for Christmas dinner.  I had no idea what she was thinking until that moment in the grocery store.  I had asked a number of times what she thought we should make for Christmas dinner when the family gathered.  Each time I asked there was no response.  I made suggestions encouraging a yes or no answer, but there were no answers, neither yes nor no.

At the grocery, she said something out of the blue about making a list.  Then I think she said the word “salad.”  The interaction caught me off guard, since she seemed to be saying that we needed to list ingredients for something for Christmas.  We were in the throes of shopping, dealing with the person in the deli department slicing cold meat for us.

That conversation ceased for the moment.  When we were passing by the meat counter, on the way to get something on the other side of it, she stopped and said something about ham.  The options I had been suggesting as options in those earlier attempts at deciding what to prepare included things we have had in the past, a spiral cut Honey Baked Ham, a brisket, turkey, even a take out Prime Rib special from a local restaurant I had just seen.  Through some asking and answering it became clear that she was talking about ham steaks.

We got two large ham steaks.  Then she said something about grapes.  Finally she said “Grape Salad.”  That is a very tasty salad that again had never been mentioned in the many times I asked about Christmas dinner.  I had gotten only complete silence in response.

What apparently was happening is what I remember Thomas Graboys talking about in his book, Life in the Balance.  Mary Ann seemed to have had conversations in her mind that never included any words coming out of her mouth.  There have been times that she seemed convinced that she had said something, or we had talked about something when there had never been any spoken words.

Occasionally, Mary Ann has seemed to blur the line between dreams and reality, convinced that there was an interaction, a conversation about something, providing information that sounded as if is was the matter of fact recounting of something someone had told her.  What complicates things is that sometimes she is remembering absolutely perfectly something that did happen, was said, something I either wasn’t around to hear, or simply forgot.

On the positive side, it forces me to listen to her without dismissing what she says immediately even if it sounds bizarre.  It may be true.  It may not be true.  On the negative side, I am always pretty unsure and often frustrated trying to figure out which is which.

Mary Ann has not been able to participate much in the shopping for Christmas gifts.  I have gotten lists or thought of or seen something in most cases.  There was one item she remembered for someone, something mentioned to her when I was not around.  We got it.  I am not sure if it is a memory of a converation in a dream or a real one.  In this case, I am fairly confident it is something she is remembering from a real conversation.  I will find out when the presents are opened this Sunday, when we celebrate an early Christmas.

I do have to admit that while sometimes pretty frustrating, it is not boring around here.  There are often surprises, sometimes pleasant ones, sometimes not.  I suppose a couple of days of boring might be okay, as long as there was a good night’s sleep included.

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.

 

December 14, 2009

Christmas Preparations

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
1 Comment 

I just forgot!  I actually forgot about the Christmas tree.  I am a Pastor, how could that happen?  It is not that I forgot about Christmas.  I just forgot about the tree business.

Up until yesterday, the thought had not crossed my mind that there was something missing in our plans for Christmas.  We have been shopping.  Plans are made for the family gathering and celebrating Christmas on Sunday, the 20th, since that is really the only convenient time for our crew to get together.  (I have absolutely no idea what we will eat that day.)

I have even done the massive decorating of the outside of the house.  The decorations are unbelievably dramatic and terribly time-consuming to put up.  I will give you the details of how the decorating of the outside of our house is done.  First I open the garage door.  Then I walk over to the shelves in the garage and take down a box.  From that box I retrieve two artificial wreaths, each with a red bow on the bottom.  I take the wreaths outside and gently place one around each of the sconces on either side of the garage door.  What an undertaking!!! I am exhausted just thinking about it.

I feel like Pastor Scrooge when I drive through the neighborhoods to look at all the outdoor lights decorating houses and yards and then drive up to our house afterward.  Mary Ann would have loved having outdoor lights.  I just couldn’t bring myself to do it.  It is not some sort of theological statement about the real meaning of Christmas versus the decorations.  I am fine with people doing whatever brings them joy as they celebrate the holiday season.

I suspect that part of the reason I have not gotten into much in the way of elaborate Christmas Decorations is that before I retired, this was pretty much the single most demanding time of the year.  Admittedly, Holy Week and Easter are up there with it.  I was so focused on work, and so overwhelmed with all the preparations that I could not muster the motivation to carve out time for decorating the house.  Some of it is that I am far too easily frustrated when trying to take on new tasks and figure out what to do and how to do it.  I needed no added stress at such a busy time.

I don’t really know what other pastors do.  I suspect we are as varied as the general population in the area of decorating the house for the holidays.

We did always put up a tree and do some indoor decorating.  Mary Ann saw to that.  She did not say anything about the tree this year, and I just didn’t think of it.  Now in case someone reading this is getting depressed for us about the tree and indoor decorations.  Now that I remembered, the tree is up.  It has no lights or decorations yet, but it is up.  There are a few things on the mantle.

I have to admit that the motivation for getting the tree up is the fact that our Children and Grandchildren will be here next Sunday.  I suspect they would all be bummed if there were no tree.  Having talked with other folks our age and older, it seems that I am not alone in the lack of interest in putting up the tree.  Mary Ann, on the other hand, would probably not tolerate going through the Christmas season with no tree.  She has always loved the lights and ornaments.  Many years ago we put tinsel on the tree each year.  We had the classic difference in technique.  I would meticulously lay each strand of tinsel over the branches, and Mary Ann would toss handfuls of tinsel on to the tree.  It is a marvel we will be married 44years on Friday.

Mary Ann’s day today included a lot of sleep.  We both slept in.  It was about 10am before we woke (other than the commode trips). I got her dressed, gave her pills and breakfast.  There was an urgent trip to the bathroom, including a couple of substantial fainting spells.  Then when I took her out to the Living Room, she asked to turn around and go back to the bedroom to lie down.  She napped for a couple of hours.

This afternoon after she got up and ate a sandwich, I got the tree up from downstairs.  Then all of a sudden, she got up and headed off.  When I asked where she was going, she said to the kitchen to make something.  I became frustrated with the fact that I was mid stream in getting the tree up, and her actions were demanding that I stop, leave the tree parts in the box on the Living Room floor and help her in the kitchen. I insisted that she give me time at least to put the tree together and get the box out of the Living Room.  I had already moved the furniture to accommodate the tree in our small town home.

As soon as she said that she was going to go to the kitchen to make something, I knew what it was.  The last time we were at the grocery, Mary Ann insisted on getting some of what we have come to call “Lisa’s Cereal.”  In fact we phoned Daughter Lisa while standing in the cereal aisle at the store.  We disagreed on what cereal it was.  We bought two boxes of Quaker Oats Squares.  There is a wonderful pecan crunch made with the cereal, pecans, brown sugar, butter, Karo syrup, vanilla and baking soda.

After the tree was put together, we headed into the kitchen and made the pecan crunch.  Mary Ann sat at the little ice cream table that resides in the kitchen eating area, while I followed the recipe, without ad libbing, and prepared that decadent and very tasty snack.

After church tonight, we picked up some food that Mary had prepared for us, Lavonna’s beans, a couple of containers of spaghetti, and Mary Ann’s favorite green Jello with cool whip and cottage cheese.

Mary Ann is in bed, but the signs are that this will not be a good night for sleep.  I hope I am wrong about that.

 

December 1, 2009

Sleepless Night — Domestic Duty Day

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

I think it was around 3am that Mary Ann finally settled.  Then, we were up pretty early again in anticipation of the Bath Aide.  Mary Ann has done no napping today, and she did not go to bed early.  Some days she can sleep well at night, then have a couple of two or three hour naps during the day.  There seems to be no rhyme or reason to when there is lots of sleeping and when there is very little.

When there has been little sleep, I appreciate that I am retired and have no major public responsibilities that would be impacted by my sleep deprivation.  I guess driving is a public responsibility.  If you see a dark colored Honda van coming down the street, give it wide berth.  The driver may be dozing.

Today has turn into a domestic duty day.  It was not planned that way, a couple of things just converged on the day. Both the medication that thin her blood (aspirin and Plavix) and the mucous production increase on account of the Autonomic Nervous System being impacted by the Parkinson’ s and Parkinson’s Dementia, combine to create the need often to change the bedding.  Today was not the usual day to change bedding, but I noticed that even the mattress pad that is protected by two chux had some stains on it.

I got out a new mattress pad and put the dirty one in the downstairs utility sink along with stained bedding, and a two or three ladles of Oxyclean.  After soaking a few hours,  and then running it through the washing machine, it is all in the dryer at the moment.

Then the weather for today and tomorrow allowed working on a much dreaded task. The Ceramic tile floor in the bathroom is a dangerous weapon in a household with someone who has both balance and fainting problems.   After a nasty fall and subequent trip to the Emergency Room, followed by a couple of hours with the Ear, Nose and Throat Specialist trying to get the bleeding stopped, I realized that the tile floor needed something to soften a fall.

I found something called Snaplock, twelve inch squares of mesh made of a strong and supple plastic mesh.  The squares snap together.  The colors were nice and the squares were easy to put together.  The squares are impregnated with something to reduce the mold.  Of course the squares must be taken up and cleaned a few times a year.  The weather is important, since the tiles get washed in the driveway, and dried in the sun.  I scrub them with an old broom after spraying them liberally with spray cleaners that kill mold as well as cleaning the tiles.  They then air dry.  They are on the driveway tonight.  I will leave them there and bring them in after the sun has done its work.

The hardest cleaning task actually is cleaning the ceramic tile that has been covered by the mesh squares.  Mold eventually grows under the tiles.  There is lots of spraying (Tilex and Clorox Cleaner), scrubbing with the broom, and rinsing that has to be done.  It is certainly worth the effort to have the protection on the ceramic floor.  Any Caregiver whose Loved One is subject to falling needs to be sure and cover ceramic tile with something safer.  Gratefully, the Snaplock tiles come in very nice colors, so the result after putting them down is not unappealing.

Blood Pressure update:  Now that I have reduced in half the Midodrine in preparation for starting the new medicine, Mestinon, I am trying to track her BP more closely.  Sitting down at the table earlier in the day, her BP was 107/65.  Tonight while lying down I tried taking it with the electonic meter.  It would not read her BP but gave an error message.  That usually means it is too high for the machine to measure.  When I took her BP by hand, it was 240/120.  There was no doubt about when the beat started and stopped while listening with the stethoscope since the beat was so strong.

That is another example of just how dramatically her BP jumps between high and  low.  Tomorrow morning I plan to add the generic Mestinon.  I hope it works.  I don’t know how long it takes to reach the therapeutic dosage. We will just wait and see what effect, if any, the new medicine has.

As always, we will see what tomorrow brings.

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.

 

November 30, 2009

“I’m Disoriented”

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
Leave a Comment 

I just went back into the bedroom for one of very many times so far this evening to check on her.  When I asked her what was causing her to be so restless, she answered, “I’m disoriented.”

She has been moving around in bed this evening, lifting herself up on her elbows and looking around.  I have become conditioned to head to the bedroom when I see much movement on the 7″ baby monitor screen on my desk next to the computer monitor.  I move fairly quickly so that she doesn’t get up and try to walk on her own.  Especially when she first gets in bed after taking her night time meds, she is vulnerable to falling due to the drowsiness that is a side effect with a couple of the pills she takes at that time.

Clearly the drowsiness has not been enough to send her off to sleep tonight.  She did not sleep well last night.  It is surprising just how much impact one restless night has on her.  She has been doing lots more hallucinating today.  As usually happens, she got up early this morning, after not having slept much at all last night.  She fell a couple of times trying to pick up things that were not there.  She popped up often from her transfer chair, sometimes unsure of what she was getting up for. 

She went back to bed after being up a while this morning and slept about three hours.  I was glad she got some sleep.  The more tired she gets, the more she struggles with hallucinations, tracking mentally, keeping her balance when walking, among other things. 

Tonight, she is just struggling to settle down to sleep.  The last time I went in she said that she was feeling guilty that the house was not clean for the cleaning lady.  I reminded her that the monthly visit from Kristie would be Wednesday, and it is only Sunday evening.  Earlier, when I was getting her ready for bed, she thought she heard the voice of the main character on her favorite television program, the Closer.  She knows that the show airs on Mondays.  She was convinced it was Monday evening.  I reminded her that just an hour before then we had returned home from going to the Evening Service at church.  Somehow even that did not seem to satisfy her. 

The next time I came she was getting completely out of bed.  She said she was looking for things to do to get ready for the cleaning lady.  As we talked about it, she asked what I did to prepare for her coming.  I described the prep I usually do, taking things off the table so that she can get to the top to clean it, taking things off the kitchen counter, putting all the toiletries in the baskets on the bathroom vanity, just general straightening up to make her job a little easier.  I reminded her that there would be no point in doing that prep work until Tuesday evening or Wednesday morning, otherwise it would all be spread out again by the time Kristie came. 

It always seems odd to me when Mary Ann juxtiposes a very lucid comment (that the cleaning lady comes this week) and confused perceptions (what day it is today).  That is the nature of a Dementia with Lewy Bodies.  Parkinson’s Disease Dementia is such a dementia.  Unlike the general pattern of steady decline associated with Alzheimer’s Dementia, LBD changes for the better or for the worse very quickly.  Someone with LBD can be very lucid one minute and completely confused the next — then moments later return to lucidity.  That characteristic often causes friends and family who do not interact with the person with LBD on a daily basis to be fooled about how serious the disease is.  Those with LBD are notorious for moving into what we (Caregivers) call “showtime” when family or friends or strangers are present, creating the illusion that they have not problem at all. 

Again, it just surprises me to see how much impact one restless night can have.  She really has seemed to be very lucid the last few days, at least most of the time.  I guess I should read the last few days’ posts to be sure about that.  I forget so quickly from one day to the next how things have gone.  It is like trying to remember what you had for lunch two days ago.  Sometimes the routine things just don’t make enough of an impression to find their way into the memory bank, at least into the branch from which subsequent withdrawals can be made with ease. 

She has been in bed for about three hours now and has been restless most of the time.  The thought just crossed my mind that some of the restlessness may come from concern for our Daughter, who is having surgery tomorrow.  It is a surgery that is considered outpatient but will include one night of monitoring her during the first hours after the surgery.  Mary Ann may not be able to identify the true source of her inability to settle.

For the moment, all I can do is hope that she (and I) sleep better tonight than last night. 

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.

 

November 27, 2009

Thanksgiving Day Went Well!

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
[2] Comments 

Maybe this will be our new Thanksgiving tradition, barbequed ribs, pork and brisket with stuffing on the side.  The meal was tasty, lots of food, great desserts, both pumpkin pie and Baskin & Robbins Grasshopper Pie for Granddaughter Chloe’s birthday treat.

Mary Ann seemed pretty tired today, especially in the morning before the kids came.  She did not talk much during the day, but Son, Micah, got her to laugh a few times. He has a way of connecting with her that is fun to watch.

Chloe is, of course, a breath of fresh air.  She is warm and engaging always making clear to both her Grandma and her Grandpa that we are loved.  She is such a sweety.

Becky brings a brightness and positive energy with her that lifts us up.  She treats us with love and respect, always thoughtful of our unique circumstances.  She always provides relief from the cleanup task by insisting on doing it for us.  That gift does not come from some automatic domestic role expectation, it is an intentional and thoughtful act of generosity, offering me some respite from the task.

Chloe and I did a little bird-feeding together.  Micah helped with a clean up of some of the Cypress needles that had fallen into the lower area of the pondless waterfall installed last summer.  I described to them plans for a possible remodel to the back of the house that would provide additional indoor space with lots of glass so that we could enjoy the waterfall and the birds more than we can now, since there is no easily accessible view of the water fall from inside the house.  No decision is made on the project, but the decision-making process is in motion.

Later in the afternoon, Micah shared something he had been thinking about.  He has plenty of access to information on my side of the family in terms of health history.  My siblings are all living, and over the years he has had a fair amount of contact given the geography with cousins.

Micah noted that he has very little knowledge of his Mom’s side of the family.  Only Mary Ann’s Mother was still living when Lisa and Micah were born.  Two of her three brothers died, one of Lung Cancer and the other of Acute Leukemia, when Micah was almost too young to remember.  The third brother chose to alienate himself completely from the family at the death of their Mother.  It is pretty much too painful for Mary Ann even to talk about.

As a result, Micah did not have a chance to get to know her family other than her Mother.  The same is so for Lisa, although, since she is three and a half years older than Micah, she probably has a few more memories of her Mom’s brothers.

What developed from the conversation was the idea of our traveling back to Northern Illinois to visit with Mary Ann’s two deceased brothers’ families to hear stories about them that will help fill in that void of knowledge.  The email has gone out to see if there is a possibility of having a family gathering to reminisce and share stories.

After a nice time on the phone with our Daughter Lisa, who shares her brother’s interest in connecting with their Mom’s family, Mary Ann has settled into bed, and I have been thinking about Mary Ann’s family connections.  She loves and is loved by her family.  The death of her Father, a few weeks after we were married, the deaths of her two brothers (each one at the age of 51), being hurt so deeply by her other brother as that relationship was severed, and finally the death of her Mother, left Mary Ann feeling very much alone.

Her Sisters-in-Law and her Nieces and Nephews seem to love and respect Aunt Mary very much.  She is not only separated from them by geography (a ten or twelve hour drive demanding two days of travel for us to get there).  She cannot talk audibly on the phone, or react quickly enough to maintain a conversation on the phone.  Sometimes she can’t get any words at all to come out.  She hasn’t been able to write legibly for the last few years.  She cannot negotiate a computer keyboard or control a computer mouse.  It is frustrating to her and to those who long to interact with her.

I hope something materializes that will allow our children a window into Mary Ann’s family, and a chance for Mary Ann to feel part of a family of her very own.

Tomorrow afternoon is the first meeting with our Cardiologist after the trip to the hospital for Congestive Heart Failure three weeks ago.  He was out of town at the time of the hospital stay.  I delivered to his office a letter and attachment requesting consideration of a change in meds that might help with the fainting while not raising her blood pressure when lying down.  I intend to report on that visit in tomorrow evening’s post.

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.

 

 

November 26, 2009

Can we cook or what?

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , |
Leave a Comment 

There were dirty pans and bowls and silverware everywhere!! How on earth did I get myself into this! We are not talking about anything that took so much as a shred of culinary skill. Stuffing and Broccoli salad are about as uncomplicated as food preparation can get, but it seemed like a monumental accomplishment to this very reluctant cook.

The plan for Thanksgiving seemed so simple.  There would be nothing resembling cooking.  Ribs, chopped pork and brisket along with a side dish would be picked up from the ToGo counter at the newly opened Famous Dave’s Barbecue nearby.  Our Son, Daughter-in-Law and Granddaughter are coming from Kansas City, an hour away, to join us for a while on Thanksgiving.  We will celebrate Granddaughter Chloe’s eleventh birthday at the same time.  The actual day was a week ago.

When we were at the grocery two days ago getting some odds and ends, Mary Ann’s feet hit the floor bringing the wheelchair to an immediate stop.  By the way, the pain that translates into my forearm (I push the chair with one hand and pull the grocery cart with the other) whenever those rubber soles so much as touch the tile floor is memorable.  The chair stopped in front of the bags of Pepperidge Farm seasoned stuffing 0n display.

I reminded Mary Ann what the plans for Thanksgiving, did not include turkey and trimmings this year.  We went on to get some other food items.  For some reason we had to double back and pass by the same display.  Those feet hit the floor again. We will have ribs and dressing tomorrow.

She wanted dressing, so we will have dressing.  At times like this, Mary Ann just moves back to a time when she was still cooking and needs to prepare food as she did before or early in the Parkinson’s.   Now, I am the one who needs to bring her intentions into a reality.  With Mary Ann in the kitchen, I made the dressing.  There were onions to be chopped along with celery.  They were cooked in butter for a few minutes, followed by the addition of the Pepperidge Farm dressing and liquid (chicken broth in a box) to the pan.  Then an apple needed to be cut into small pieces,  pecans chopped, a few handfuls of raisins, dried Cranberries, cut up apricots and dried blueberries put in the measuring cup.  All of them were added, folded in and the final product was put in baking dish, ready to for the oven tomorrow.

Then came the Broccoli salad prep.  Out of the blue yesterday afternoon, Mary Ann decided we needed to make broccoli salad.  After the stuffing was in the fridge, the broccoli heads needed to be transformed into very small pieces of broccoli.  Another onion, this time chopped into very tiny pieces, more raisins, dried cranberries and dried blueberries were all mixed together.  We happened to have in the freezer the requisite bacon bits to mix in also.  A bottle of salad dressing was added to the mixture, which then went into the fridge to marinate.  Tomorrow a cup of sunflower seeds will be tossed in just before serving.

At this point, with stuffing, broccoli salad, Cranberry celebration from the deli counter at the grocery, a Copper Oven pumpkin pie and a second pumpkin pie from Mary, along with Cool Whip for the pie, we may as well have gotten a smoked turkey, made mashed potatoes and had a traditional Thanksgiving meal. As it is, it will be a very interesting Thanksgiving meal.

I was, of course, ambivalent about tackling even those simply made dishes.  My first reaction to Mary Ann’s suggestions included a twinge of resentment that I would be the one required to do that actual preparation.  I realized it would be a good thing to do that food preparation because Mary Ann would be pleased having the items at the table as the food she brought to the meal.  It would give us some time during which we would both be focused on the preparation task.

Both food items are now prepared and in the fridge.  As the day wore on a supper meal also had to be prepared.  More onions, some bratwurst that had been browned, sliced apples and Bavarian style sauerkraut all cooked together to flavor one another served as supper.

I have no idea how it is possible to end up with so many dirty pans and utensils, cutting boards, bowls, measuring cups, and dishes — and these were simple dishes to make.

When the time came to decide what we would do about the evening Thanksgiving service tonight, Mary Ann had used up her day’s energy.  She was in bed before the Service would have concluded.  In years past we attended the Thanksgiving Day morning service, which was discontinued this year.  It was a smaller group, making it easier for us to negotiate, and it was at a time of day that was easier for us to manage.

Mary Ann did pretty well today.  There was no nap, but she is still having a little trouble settling.  Hopefully she will sleep most of the rest of the night. Tomorrow is a big 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.

 

November 25, 2009

Caregiving Husbands

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , , , , , , |
Leave a Comment 

“Today I read an article in Web MD that male caregivers were more likely to leave their wives than female cg to leave their husbands, so kudos to all you guys that have stayed with your wives!!!”

That is a quote from one of those in the Caregiving Spouses group.  It started a stream of posts wondering why that might be so.  In that stream of conversation came the statistic that 40% of Caregivers in general are male.  I am reporting what was written about male Caregivers.  I have no formal verification that what was reported is accurate.

Assuming that more husband Caregivers leave their wives than the other way around, there are some things that I and others mentioned might be part of the reason that is so.  It is hard to talk about this without unfairly stereotyping men and women.  As is the case with most generalizations, it is not true that anyone is bound to be a certain way.  Each of us is unique and needs to be judged on who we are and what we do, not some external sterotype.

With that said, my generation and my parents’ generation grew up with certain assumptions about the roles of men and women that may play into how each does in the caregiving role.  I can remember my Dad standing in the kitchen, the room with the coffee maker, calling out to my Mom, asking for her to get him a cup of coffee.

Dad was not harsh and demanding, it was just the way it was.  Mom wasn’t meek and mild, she stood up for herself, but it was just the way things were done in our household.  By the way, even though I grew up that way, and Mary Ann did as well, I would never have gotten away with such a silly request.

The culture of roles in my experience was that men were often not raised to be caregivers.  Mom did the cooking and cleaning and child-rearing, and Dad went to work, took care of the home repairs and outside maintenance of the house and yard.  He also took care of the finances.  Mom and Dad talked about decisions.  It was not that Dad ruled.  They just each had roles like the ones they grew up with.  Dad was born in 1901 and Mom in 1907.

Dad bowled, golfed, watched boxing and wrestling on television (after we finally got one when I was eleven years old).  Mom did lots of sewing, was active at church, doing what then was perceived to be women’s tasks, most often serving others in some way or teaching children, singing in the choir.

For those men who grew up in that sort of setting, taking care of someone else was moving into pretty foreign territory.  I have to admit, that the caregiving model of behavior has been quite a stretch for me.  I grew up at least as self-centered as most males of my generation (again a risky generalization).  I am flying by the seat of my pants here.

I joke about not doing a good job of providing meals.  While I am a reasonably intelligent person and certainly am capable of cooking a meal, the pattern of what to do and when to do it when cooking is not in that portion of the brain that I call automatic pilot.  It is the place in which the “never forget how to ride a bike” sort of information is kept.  Every time I think about preparing a meal, I have to start from scratch, figuring out every element of the task as if I have never done it before.

Yes, I put colors and whites together, cram the washer full and just switch the dial to cold water only so that everything won’t come out the same color.  Sewing buttons on is a ridiculously challenging task.

I suspect that for some caregiving husbands who bail out on their wives, the difficulty of the tasks, their inexperience with doing them, their selfishness and stereotypical view of who should serve and who should be served, combine to overwhelm them, and they just run away.

It seems to me that whether male or female, there is one simple reality.  We made a promise out of love for one another.  We gave our word.  To run away seems silly.  To where would we run?  Our broken promise would go with us wherever we went.  What exactly would there be to be gained that would be worth having?

I have had the privilege in forty years of ministry to be allowed to see into the most intimate corners of the lives of many hundreds of people.  For the most part I have seen men and women alike who love and care for one another, honor their commitments and keep their word to one another.  It is the way to live with meaning and purpose the lives we have been given.

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.

 

November 20, 2009

Update and Gifts of Daily Bread

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

Noma called this morning and asked if she and Herb could bring over a couple of bottles of Herb’s home made wine.  For a number of years, Herb has provided home made wine for the Thanksgiving Communion services at the congregation from which I retired.  He makes very good tasting wine.  Herb and Noma also brought a little meatloaf that Noma had made, and some home made peanut brittle.

The week started with Jan bringing with her a very tasty Mexican chicken pie on Sunday when she came to spend time with Mary Ann.  Then early in the week Mary brought by a large container of soup made using the Olive Garden recipe for their Pasta E Fagioli.  Jeanne came over for a part of the day today and brought a Quiche from Copper Oven, along with a piece of pie from there for each of us.  Mary Ann’s pie was one of her absolute favorites, Lemon Meringue.  Tomorrow, Mary is going to bring us some pork loin and dressing.

So much of the time Mary Ann is forced to eat my culinary creations, which I just decided to dub, Pastor Pete’s Pottage.  Mercifully, the pottage is interspersed with Glory Day’s pizza slices, Bobo’s burgers, Perkin’s pancakes and a variety of take out foods.  This week Mary Ann is eating like a Queen.  I, of course, am not wanting for good food either, since she needs help in consuming it all.

When food is brought to us, as it has been this week, very often it is brought with the instructions that it can be put in the freezer (or some portion of it) to be enjoyed at some time in the near future.

One of the best things about the food this week is that it is coming at a time when I have been concerned about getting more calories in so that she can stop losing weight.  Convincing her to let me feed her is not always an easy task, but she has let me do so here at home more often.  When I help her, she eats much more.  She has been eating very well with all the good food that has been appearing at our home. We weighed her this afternoon and found that she had gained back about a pound, after having dropped five pounds.

At lunch today, Mary Ann age a full quarter of the Quiche, followed by that very large piece of Lemon Meringue pie.  With my help feeding her, she ate every crumb of both.  She had eaten a good breakfast, the usual yogurt, juice and a large bowl of Shredded Wheat Mini-bites.

She was very tired today.  Yesterday, she got up fairly early and then went back to bed for a relatively short nap.  She ate well and was up the rest of the day.  Today, after the good breakfast, she really shut down and needed a nap.  Shortly after Herb and Noma came by followed by Jeanne’s arrival, Mary Ann got up and was up the rest of the day.

There was one episode that moved me to go ahead and increase the Midodrine that raises her blood pressure.  Between the Quiche and the piece of pie, as she was sitting in the chair at the table, she just went out, had a fainting spell.  I managed to take her blood pressure after she came out of it.  Her BP was 100/60.  That is pretty low for just sitting in a chair.  It sometimes drops lower than that, much lower, when she stands up.  (One time during a tilt table test at the hospital, it dropped to 50/30, when she was moved from lying down to 70% of the way to standing upright.)  When she is lying down it is often as high as 180 or more, over 105 or more.

I have changed out the pills in her daily pill containers so that the dose of Midodrine will return to the pre-hospital stay level.  I have also printed from the Internet an article by the National Institute of Neurological Disorders and Stroke, a component of the National Institutes of Health.  The article describes a study of a drug named pyridostigmine (brand name, Mestinon), which seems to help the problem of Orthostatic Hypotension (low blood pressure when standing) without raising the patient’s blood pressure when lying down.  The drug’s intended use is to treat myasthenia gravis.  This is an off-label use of the drug.  The study concluded that a low dose of Midodrine combined with therapeutic dose of Mestinon was able to control the Orhostatic Hypotension in most of the subjects.

I will fax or mail or take the article to our Cardiologist to see what he thinks of the idea of trying this new approach.  Our Neurologist, a nationally known authority on the treatment of Parkinson’s, had suggested the option of using Mestinon when the problem of fainting got so much worse last summer.  The goal, of course, is to gain a manageable quality of life without raising her BP to a long term harmful level.

At the moment, Mary Ann seems to be sleeping soundly.  We will hope for a good night.  The weather is supposed to be great tomorrow.  Maybe we can get out of the house for a while.

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.

 

« Previous Page — Next Page »