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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: , , , , , , , , , , , , , , , , , |
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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: , , , , , , , , , , , , , |
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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 12, 2009

Sleep! Sweet Sleep! Plus Physical Demands

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , |
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Whatever happens today, last night we both got a good quality, long night’s sleep.  Mary Ann is still sleeping.  It is a little after 9:30am.  Because of Veteran’s Day yesterday, Bath Aide Zandra did not come.  She has arranged to come later this morning, so Mary Ann will need to be up soon.

Later: Mary Ann made it up in time to get her meds taken before Zandra arrived. She has had another loose stool (sorry!) which has been happening for many days now.  It raises the question as to whether or not there might be some sort of bug causing some of her problems.  We will wait it out.  So far it is manageable.  i just want to be sure Mary Ann doesn’t get dehydrated.  Checking urine color (sorry again!) should provide evidence one way or the other on that.  We will not involve doctors and hospitals unless there is something clearly demanding that involvement.  If the weight loss continues, I will probably phone the GP’s office for a recommendation of a supplement.  Actually, I will also check with the LBD Spouse Caregivers online group.  They have far more experience with what works than any medical professional.  It seems clear that Mary Ann is just not getting enough calories in to maintain her weight.  Oh how I wish I could painlessly transfer about twenty pounds from me to her. I tried to get her to eat a some spectacularly sweet and tasty and moist cherry (homegrown and canned) and nut coffee cake that Maureen brought yesterday.  She just wouldn’t eat anything.  I, of course, had a huge piece.

After the intestinal activity, Mary Ann decided to lie down again.  She has seemed very tired since getting up this morning.

Gratefully, whatever strain lifting Mary Ann from the floor the other night seems to have been healing on its own.  The physical demands on Caregivers are often substantial and constant.  When I read the online posts of other caregiving spouses, I wonder how on earth they can do it.  Most of them are women, many of them my age or older.  Some of them have husbands who weigh two or three hundred pounds (one is a former heavy weight boxer).  I have no idea how they deal with the demands.  Many have a Hoyer lift to use when necessary.  We have one also, but have needed to use it only a couple of time in the years we have had it.

The physical demands of course include helping Mary Ann up from the floor when she falls.  Our system is not necessarily recommended by physical therapists, but has worked for us for many years.  When she has fallen, I work at sliding her (by pulling on her legs) into an open space where she can lie on her back with her feet toward me and her head away from me.  I put my feet together in front of hers so that they won’t slide, she reaches up and I take hold of her hands.  I rock back, using my weight as a counter balance so that my back is not involved in the process of lifting.

The risks in that approach are mostly to Mary Ann’s arms and shoulders.  Again, since she is not heavy and we have been doing it for so many years, her arms and shoulders seem strong enough to manage.  So far there have been no noticeable side effects to that process.

One of the movements that has created problems for me in the past, is that which is required to turn Mary Ann in bed and move her to the center of the bed so that she doesn’t risk falling off the side of the bed (been there!).  We have single, adjustable beds.  For many years she has been able to climb on all fours on to the bed and flop down one way or another.  She has come very close to flopping right off the edge of the bed on to the floor.  Now, most of the time she simply cannot negotiate that movement.  When she tries, she usually gets stuck on all fours on the bed or with one foot still on the floor, unable to move any farther in the process.

Now, most often she sits on the side of the bed, and if she wants to lie on her left side, facing the television, I cradle her and twist her in a sort of dramatic swinging motion until she is facing the appropriate direction.  Then I lean forward, slide my arms under her and pull her toward me to center her on the bed.  That is the motion that has caused back pain in the past.  Now, I squat down and let my body weight (lot’s more than her body weight) pull her to the center of the bed.

If she wants to lie on her right side, the side of choice for her, again, she sits on the side of the bed.  I let her head down to the pillow and reach with my right hand to lift her feet on to the bed.  Then I travel to the other side of the bed to pull her to the center.  Since the size of the bedroom does not allow much space between the two beds, I often can’t seem to get accomplished the motion using my body weight.  Most often, I slide my arms under and just pull her to the center with my arm muscles, a movement not unlike doing a curl.  Again, that keeps from involving my back in the process.

Now with that image in mind, imagine the nights she is up every few minutes.  One of those two actions of moving her to the center of the bed happens every time she gets up, even just to sit on the side of the bed.  When I watch her on the monitor, if she begins to move at all, I head in to see what she needs.  Sometimes she just needs to be turned from one side to the other, or the covers have gotten twisted out of place.

When we travel, the large beds pretty much preclude my reaching under her to move her.  I can do some manipulating to help position her, but most of the options are simply won’t work.  If I try to move her much, it puts my back at risk.  It won’t help her if I am debilitated.

At the moment, one of the activities that is the most risky for both of us, is the trip to the commode.  I pull her up to a sitting position on the side of the bed and pull the commode close enough so that it only takes a transfer with a few side steps to get her into position, pull down her Pj’s and disposable and get her seated on the commode.  That part is pretty straight forward.

The risky part comes when she is finished.  I pull her up and hold her so that she can use the TP I have handed her.  Most often, she just cannot balance well enough to stand on her own.  I hold her with one arm, feeling her weight against it, knowing that if I let go she would fall back down on to the commode and over the back of it into the wall (does that description ring of experience?).  While holding her with one arm, I have to reach down first to pull up the disposable (we call it a pad), which of course binds since I can only pull from one side, the other hand attached to the arm holding her up.  It is hard for her to remember and then to have the dexterity to move her knees apart enough to get the pad through and pulled up.

Then come the pajama bottoms next.  They have always gathered at her ankles.  Reaching down all the way to the floor with one hand while holding her with the other high enough to be above her center of gravity so that I can keep her from falling challenges my flexibility and strength.  When I think of it, I remove the PJ bottoms so that I can put them on her in a separate action while she is safely sitting on the side of the bed.

The commode trips come very often since one of the problems of a compromised Parasympathetic Autonomic Nervous System is the need to urinate frequently.  The last time Daughter Lisa stayed with Mary Ann over a couple of nights, she shared with me that she was pretty concerned about the risks associated with the night time commode trips.  Both of our children are very concerned about the precarious nature of our situation.  They recognize that it would not take much to mess up our system.  If I am not able to handle Mary Ann, either due to her physical condition or mine, a whole new set of challenges would emerge.  None of us wants even to think about it, although it is hard not to do so.

One other activity has become more challenging since the hospital.  There are more times when she can’t open her eyes, and/or is almost too weak to walk making the short trip from the door to the car pretty difficult.  If this continues, I will set up the aluminum ramps and roll her down the two steps to the door of the car in her transfer chair.  Oddly, steps are far less problem to handle than walking on a level floor to those with Parkinson’s.  Steps usually are her best thing.

While I need cardio-vascular conditioning exercises, I think I am getting plenty of upper body strengthening in this caregiving role.

It is still only mid-day, but this has gotten far too long — as have most of the recent posts.  She is still sleeping.  I hope to get her in the car and to the grocery store this afternoon.  We will see.

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 2, 2009

To the Hospital We Go!

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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This is one of our most dreaded experiences.  Mary Ann felt some chest discomfort after a long nap Saturday afternoon   We had returned home from Eureka Springs Friday late in the day.  We were in the car when she mentioned the discomfort.  I gave her a Nitroglycerin pill (sublingual) and we drove to the next stop to give it a chance to work.  It did not seem to help.

She described the pain as a heaviness in her chest rather than a sharp or focused pain.  I recognized that as the Congestive Heart Failure sort of description of discomfort.  We stopped at the house to pick up a couple of things and headed off for the Emergency Room.

Sure enough, she was in heart failure.  There was Pulmonary Edema, fluid build up in her chest.  There also were slightly elevated heart enzymes which could indicate a heart attack of some sort.  The blood tests since then have indicated that there was not a heart attack, just the Congestive Heart Failure.

She was admitted so that they could go through the normal series of tests to check things out.   Of course, since it is a weekend, any tests other than xray and blood tests need to be done on Monday.

Hospital stays are dreaded not because there is something wrong with the hospital or the staff.  One problem is that the complexity of Mary Ann’s cluster of problems and the many medications taken at very specific times are hard to handle with rotating shifts and rules that are constructed to cover any liability for mistakes. That complexity demands my staying with her in the room 24/7 until she goes home.

As usual, she was up the entire first night.  And, of course, so was I.  Gratefully, she did sleep much of the night last night.  I had anticipated being up all night every night, so getting some sleep last night was a treat.  Of course there were very many times during the night that vitals were taken, blood was taken, and various other activities woke us up often.

Getting the meds from the hospital pharmacy is tedious and frustrating.  There are patterns that need to be followed that sometimes result in the timing of pills changing in ways that don’t make sense in terms of the result that is sought from taking them. The staff has been willing to accept my input, making that issue less of a problem.

The doctors are tugged in so many directions with emergencies often tying them up for long periods of time (a good thing for those having the emergency) that there is no knowing when they will come in for the report, to answer questions and give instructions.  As a result those of us who are Caregivers have to remain in the room until they arrive — no matter when in the day that turns out to be.

This morning we are waiting for the doctor to tell us if Mary Ann will need a heart cath (unlikely at this point).  Just in case the test is to be done, she can have no food or drink.  It is after 9:30am (10:30am according to her body clock since the time changed yesterday) and she has been begging for food or drink since about 6:30am.  She was pretty tired and unresponsive yesterday, so had very little food, only a couple of snacks.

One of the most difficult problems to negotiate at the hospital is that the combination of the stress, lack of sleep, medication changes, and the changed routine results in lots of confusion.  The hallucinations increase.  There have been lots of people in the room (not actually here), needles, threads, water, and just a few minutes ago, a ten dollar bill on the floor.  After confirming that it was not there, I suggested that she keep working on that one and make it a twenty.  She immediately responded “greedy.”

Sometimes in the past she has gotten pretty resistant, sometimes unwilling to do what she is asked, sometimes pulling out tubes, getting almost belligerent.  This time there has been just a little of that, at least so far.  It has been manageable.

Our Son, Micah, came for most of the day yesterday, so I had a chance to go home and shower.  It was too bad she was not able to stay awake or respond much to him.  She still appreciated his presence.  They have a good time together.

I am pleased that there is wi-fi here so that I can check email and write this.  Last night the connection was going on and off so often that I never did get this finished and posted.  I was too tired to keep waiting for the connection to return, so I gave up and fell asleep.

That is all I will write for now.  We hope to be home soon, but will, of course, deal with whatever comes.

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

 

October 10, 2009

Walking Mary!

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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She got out of the car and walked up the steps into Dick and Dee’s house.  It was a bit of a walk, but rather than stopping to get the transfer chair from the van, we just walked into the living area to sit down.  I brought the transfer chair into the house, but from then on, it was never used.

We talked for a while.  Dick is also a retired pastor, and Dee has been very involved in church activities.  Not only that, but they both, especially Dee, are avid birders.  They love the wildlife and the outdoors.  They have built a heavenly respite with a wall of windows with deck and bird feeders framing the view of a very large pond surrounded by trees.  Between family and church, birds and other wildlife, we had lots to talk about.  You should hear Dick’s raccoon stories.

We visited with our Nephew, Tom, who shares the love for birds, the flora and fauna.  Our Niece, Jill and her three boys came by.  It was a very pleasant and satisfying mini-family reunion.

Then came dinner.  Much to my dismay, the lavish meal of mostly homegrown, nourishing and tasty foods dramatized the paltry fare to which Mary Ann is subjected on a regular basis.  We both ate voraciously, realizing we would be back at our usual table soon.

Later we went next door to see Jill’s newly built home.  Mary Ann walked outside to get in a golf cart that delivered her to the garage of Jill’s home.  That is when the walking began in earnest.  The house is huge, well-designed, woodwork done by Amish artisans.  We walked from one end to the other, enjoying what would put to shame most of the Home Network’s best.

After touring the house Mary Ann walked back to the golf cart, rode to Dick and Dee’s place, walked into the house, and we talked some more.  Then she walked out to the van so that we could head back to the motel.

Those of you who followed the events of a number of weeks ago will appreciate the significance of that walking.  After going through a time when Mary Ann could walk only a few steps, sometimes not even that before fainting, this was a pretty dramatic display.  I conditioned myself to jump up and either help her walk, or ask her to sit back down so that I could move her from one place to another in the transfer chair — seeking to avoid a fall that could do damage to her.  As this roller coaster we are on moves up for a time, it seems that I need to re-condition myself to just let her walk.

The harsh reality is that tomorrow may bring another dip in the ride — but maybe not.  It is a challenge to re-train my auto pilot to respond differently when she gets up.  It is encouraging to see her walking so well.  My hope is that the more she walks the better she will do at it.  She has gone down but not very often.  For the most part, I still stay very close, often with my hand lightly on the gait belt or holding her more tightly.  If she seems to be walking well and she is on carpet, I back off.

A few weeks ago I was wondering if we were beginning the endgame.  That thought has retreated for now.  The fall weather is energizing, and Mary Ann seems have perked up also.  When we were walking into the house, having just returned from our week long trip, after 11 hours on the road in pouring rain, she said “that went pretty well.”  Last summer I thought our traveling days might be over.  At least for now, it seems not be so.  In two weeks we head for our very favorite Bed and Breakfast in Hot Springs, Arkansas, Lookout Point – Lakeside Inn. [http://www.lookoutpointinn.com/]  There is no knowing what will be so when the time comes to load up and head out for that trip.  For now, we will just enjoy the moment.

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 7, 2009

Days Added to Trip.

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , |
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After the litany of travel challenges in my last post, we have decided to add two days to this trip!  Are we crazy?  Maybe.  The challenges have continued. Tonight, as I was doing some pre-loading of the car to save time in the morning, I changed shirts to take the one I was wearing to the car.  The moment the door of the room closed behind me, I realized what I had done.  The keycards were still in the room since I had taken them out of the pocket of that shirt.

I was locked out!  Under normal circumstances, the solution would be simple.  Knock on the door and ask Mary Ann to open it and let me back in.  She was lying on the bed no more than five or six feet from the door.  I knocked on the door loudly, calling her.  Finally, I heard her voice.  She told me to wait a minute.  After a short time, I called out to her again.  That went on for a few minutes until finally she said, I can’t get out of bed.

I ended up downstairs at the desk.  The young man behind the counter had to give me a master keycard.  Mary Ann was on the bed on her back simply uable to coordinate getting up to turn the handle so that I could get in.

In the morning, Daughter Lisa will arrive with Granddaughter Ashlyn fairly early in the morning by our standards.  Lisa will give Mary Ann a shower, take her shopping and then to lunch.  I will take Ashlyn on her class trip to the pumpkin patch.  Those activities are the reason for adding one day to the trip.

Since we are only two hours away from my oldest Brother, Dick and his wife, Dee, we decided to travel there, get a motel and visit with them for the evening. That is the second day we are adding.  Neither Mary Ann nor Dee were up to traveling to the family gathering in Northern Illinois this summer.  This is a chance to make up for missing that time together.

The next two days will reveal whether or not it was wise to extend the trip.  So far we have dealt with the problems encountered as they have arisen.  My hope is that whatever is yet to come will be manageable.  We will take it one day at a time.  Gratefully, that is exactly the rate at which it comes, whatever it may be.

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 5, 2009

Is Traveling Worth the Trouble?

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , |
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First hugs from the Grandchildren answer that question.  It just isn’t easy!  Of the many things that are more difficult when traveling as a Caregiver, one of the most frustrating is the sole responsibility for packing. 

I remember hearing from single parents and those who have lost their spouse in death one of the most difficult challenges is making all the decisions without access to consultation.  There is no one to ask, should I let the kids do this or not — should I do that repair on the house? 

When packing for a trip, each has a certain amount of responsibility for remembering what to bring along.  There are endless decisions to be made.  What clothes should we bring so that we can be fitting for weather and formality of events.  If we bring one color/style of shirt or top, there need to be shoes and socks and slacks to match. 

Decisions are tough to make at best when one has the beginning stages of dementia and the other isn’t exactly on his best game.  I asked Mary Ann what she wanted to take along.  She wanted what I call her fancy pants and top.  The most hated black shoes with short heels are a part of that outfit.  I hate them (not too strong a word) because they are treacherous for her to walk in and they refuse to stay on her feet — I am chasing them constantly.  Their favorite trick is to pop off midstream in getting on or off an elevator, going in or out of a door.  Maybe it was due to a subconscious aversion to them that resulted in my forgetting to put in the knee high nylons that she wears with them. 

I work very hard at creating and sustaining certain rituals associated with medication so that there are no missteps in having what is needed, and administering it on time each day.  There are, of course, multiple prescriptions, many including more than one dose a day.  There are four compartments in each day’s plastic pill holder.  The morning one has six pills, the next one has six pills spread through the day, the next compartment has three pills spread through the day, and the night time compartment holds four pills.  There is also a powder to mix with water or juice four of the seven mornings each week.

All of it was in order for the trip, along with all the meds needed to refill the compartments for the last half of the trip.  At least that is what I thought to be true.  Saturday, after returning for the night to the extended stay motel, I began filling the compartments.  To my horror, there was no pill jar of Midodrine there.  That is the powerful med that raises Mary Ann’s blood pressure to keep her from fainting.  To stop cold turkey the next morning would be dangerous.  When I have adjusted that med in the past, the doctor has insisted that the dosage be raised or lowered a small amount at a time over many days. 

What had happened?  I had broken ritual.  The caps of the medicine bottles are numbered (Mary Ann’s idea many years ago).  Refills not yet in use have no numbers on the top.  I transfer the old cap to the new bottle when the old one is empty.  I had not put a numbered cap on the new refill of Midodrine already in use.  I grabbed only the numbered cap bottles.   

As I sat there Saturday night, looking at the pills, my panic shifted quickly to planning.  I am grateful for the national database maintained by Walgreen’s Pharmacy.  I phoned the nearest 24 hour Walgreen’s here in Louisville, KY.  They accessed our account in Kansas.  While we normally use mail order meds, the recent change in dosage had required a short term prescription at Walgreen’s.  There was a current prescription that could be filled here to rescue us from our distress. 

After I phoned and was told the refill would be ready in 45 minutes (about 11pm), I resumed filling the bottles.  To my chagrin, the Thyroid med bottle only had two pills left in it.  I suspect you can imagine just how horrified I was at my own incompetence.  This morning I suggested to Mary Ann that she might want to trade me in on a more competent Caregiver. 

This med will demand a new prescription from the doctor, since we have only the mail order prescription open.  The request is now in the hands of the Pharmacist who has assured us that by tomorrow afternoon it should all be worked out.  Gratefully, the two pills will cover Mary Ann until then.

The other travel trouble is less appropriate for publication.  It is in the area of the Caregiver’s role in waste management [see earlier post].  There has been a difficulty in that area demanding my hands on involvement for three days now, with two or three sessions each day.  Those problems seem much more troubling when dealt with away from home.

Since there is a need for a handicapped friendly environment in which to stay, the costs of traveling have increased dramatically.  Staying with folks in their home, no matter how gracious and welcoming they are, is often simply not an option.  Lodging costs add up at a frightening pace.  A trip that we have in the past made in one day, now demands an overnight stay, adding still more to the costs. 

It is a little embarrassing just how long it takes us in the morning to get ready to leave the room so that we can start the day’s activities.  The usual multiple times up at night make early rising a less than satisfying option.  The result is that there is not so much time for doing things together each day, the object of the travel. 

While this is a litany of struggles that come with traveling, the hugs more than compensate –  the smiling, enthusiastic little faces drain away the frustration and replace it with joy and satisfaction. 

Is traveling worth the trouble?  Yup!

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 30, 2009

Be Careful What You Ask For — or Not!

Posted by PeterT under Daily Challenges, Family, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , |
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We asked for sleep, got sleep.  Then got no sleep.  Almost as soon as I hit the publish button after writing last night’s post, Mary Ann woke up and a restless night ensued.  She had been up all day, she was up most of the night last night, up all day today.  I was worried that my decision to increase the Seroquel had initiated a cycle of too much sleep???  No more worries on that front.

I did work at keeping her up today.  She had Small Group Bible Study in the morning, followed by a trip to the library.  This afternoon when she started to doze in her chair, I made the sacrifice of taking her for ice cream — just to keep her awake you understand.  She went to bed a bit early, slept for an hour, and woke up.  She has now taken her night time meds.  She seems to be moving a bit, but at least at the moment, not getting up out of bed.  We will see how the night goes.

Ev commented on last night’s post, reminding me to enjoy the gift of a good night whenever it comes, since folks with LBD or PDD often have bad nights.  It just comes with the territory.  Well said! Our task is to accept that we can’t control or manage this disease.  Very little of what happens can be predicted or impacted by what we do or don’t do.  We need to learn to take what comes, make the best of it, sometimes whine a little about it, and then move on to deal with whatever comes next!

Tomorrow afternoon we will head off for Kentucky to visit our Daughter, Lisa, Denis and the girls, Abigail and Ashlyn.  The girls have a few days off school.  We are taking two days to drive there.  For us, at best it takes about ten hours when done in one day.  Hopefully, this will make the trip a bit easier.

Since this summer’s decline, even though there has been some improvement, we are not going to try to stay in the downstairs room, requiring a trip up the stairs each morning and down again at night.  We will stay in a motel.  That will impact dramatically the cost of the trip, but will be much easier on both Mary Ann and me.  It will be a treat to see the girls especially.

I should have access to a computer while we are in Kentucky, so there may be a post or two while we are on the trip.  Here is hoping the trip goes well for Mary Ann especially.  We have another trip to the Bed and Breakfast ini Hot Springs, Arkansas scheduled for the last week of the month.  It is a lot to tackle, but we have to do what we can while we can.

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 28, 2009

Solutions Seem So Obvious!

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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Then why don’t we act on the obvious solution and solve the problem!

She napped for over five and a half hours today.  She napped for over three and a half hours during the day yesterday.  I can’t remember how long she napped the day before that.  Isn’t it obvious?  Just keep her up during the day and she will sleep through the night.

I just read an article in the online newsletter from ScienceNews.  Apparently a recent study using rats associates sleep deprivation with an increased risk of experiencing Alzheimer’s Dementia.  The assumption was that the sleep problems were a result of the disease.  It now seems possible that they are part of the disease process itself. (Yes, I, too, wonder how a technician can determine if a rat has Alzheimer’s Dementia —  actually, I do know the answer to that, but I am not saying here — suffice it to say, once the information is obtained, the rat no longer needs his/her pension.)

Back to the solution.  Why not just keep her up all day?  I am sure that solution seems obvious.  If it is hard to keep a two-year-old awake when those eyes fall shut and that little body goes limp, if it is hard two get a two year old up early from a nap without a major meltdown, imagine trying to get a strong-willed, independent adult who has a right to make her own choices up from a nap when she wants and needs very much to continue sleeping.

I can remember a day some weeks ago when I managed to keep her up all day with trips here and there.  She was restless that night anyway, up and down for most of it.  On the other side of it, while things may change at any time, after having that more than five and a half hour nap today, she was tired and went to bed early this evening.  She has been sleeping soundly for the three and a half hours since then.

Obvious solutions don’t always work.  With that said, I admit that it would make sense to try to get her to sleep less during the day to increase the likelihood of sleeping soundly at night.  One of the struggles with being very assertive in waking her up is that when she is napping, I have time to myself.  I am able to concentrate on tasks and accomplish things that can’t be done when Mary Ann is awake, up and about.

Today was a spectacularly beautiful day, warm and breezy.  With the video monitor on the table next to me, I was able to sit on the deck and read, while enjoying weather, the waterfall, the birds (hummingbirds buzzing over me regularly).  I finished the book on weight control (The Volumetrics Eating Plan) with time left over for a snack of potato chips (just kidding).  I did try to get Mary Ann up a number of times after the first three of the five and a half hours, but she just couldn’t do it.  She had said she felt pretty bad when she laid down this morning — no wonder after two nights of almost no sleep.I knew she needed the rest.

I guess, if I appreciate the time the daytime napping gives me, I shouldn’t whine about the restless nights.  I concede the point.  The glitch is that I am not getting much sleep either.  I could try to nap whenever she naps.  That also makes sense.  Were I to do that, my every waking moment would be centered around her needs.  To survive and remain useful to Mary Ann, I need some time to myself when I am awake.

Sometimes obvious solutions don’t really work as well as logic would suggest they should.  I suspect that those looking in from the outside lose patience when obvious solutions are not used to solve the problem about which the Caregiver is complaining

As I was preparing to write this post, I thought about the legions of Caregivers out there.  First of all, every parent has experienced the challenges of caregiving, unless they have abandoned their responsibility to their child[ren].  Single parents, especially those with more than one child have challenges I can’t even begin to comprehend.  There are many who have responsibilities to their children (they never end, no matter how old the children become) and at the same time responsibilities in caring for their aging parents.  There are those who have severely troubled children, physically and/or mentally.  They struggle to care for them, some have to make tough choices demanding allowing others to do the care at a facility outfitted for that care, having around the clock staff to give that care.

I have the luxury of having only one person who needs my full time attention.  Gratefully, our children do not need our care.  In fact they are members of the sandwich generation, raising their children and concerned for our needs as well.

All in all, I guess I should stop whining.  I won’t, but I should.  I think those who are full time Caregivers need some whining time.  Blogging is great, since it creates the illusion that there are people listening.

Whether anyone is listening or not, it helps to talk about it.

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 22, 2009

Sleepless Nights: Most Don’t Understand.

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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It just sounds like complaining, endless whining.  Caregivers are often very boring conversationalists.  Someone says, “Hello, how are you?”  Caregiver responds, “I was up fifteen times last night and eight times the night before.  We slept late in this morning, but I can’t concentrate enough to read anything more than the captions on pictures.  Simple tasks seem overwhelming, and by the way, what is your name, and what is it that you just asked me?”

Last night was a moderately restless night for Mary Ann.  We were up maybe once in each hour during the night for one thing or another.  That pattern is more bearable than the really restless nights when it is multiple times throughout the night.  She got up early this morning, but napped for a couple of hours. It just doesn’t seem to work for me to try to turn on the napping switch and sleep whenever she takes a nap during the day.  Anyway, I relish the time to do the things I can’t do when she is awake and in need of help.

The truth is, there is no way to communicate to anyone who isn’t in the same circumstances just how hard it is to get pretty much of anything done when the sleep patterns are completely erratic, with no ability to plan when there will be sleep and when there won’t be sleep.

While I was on the retreat in Oklahoma, our Daughter Lisa stayed with Mary Ann.  The first of the two nights, Mary Ann was very restless, and Lisa didn’t get much sleep.  Mary Ann was up early as she usually is after a restless night .  The next night, they both slept like a rock and slept late into the morning.  When we talked after I returned, it was apparent that she had a sense of what it is like to have the kind of erratic sleep patterns that are our normal experience.  She, of course has two young children and knows what is it like to have difficult nights and little sleep.

It is just nice to have someone in the circle of support who understands how hard it is to plan and do anything when there is no sleep pattern.  One of the reasons that I enjoy the trip to the Spiritual Renewal Center is that the many hours of uninterrupted sleep seem to return my ability to read and understand what I am reading.  I can’t say that I have read any of the book on Quantum Physics and Theology other than on the Oklahoma Retreats.  I often feel embarrassed at how little I manage to get done each day, and how poor my memory has become.  I am hoping that both are a function of the sleep patterns rather than the disintegration of my brain.

One of the problems the lack of sleep increases in Mary Ann is the intensity of the hallucinations.  I have mentioned that often before.  Today, she got up and headed toward the bedroom.  I asked what she was doing.  She was reluctant to tell me, probably not wanting to hear my opinion on whether or not she should be trying to do what she was planning.  She was going in so that she could sew a button on.  I don’t know what button needed to be sewn on to what.  She had just asked me to help her take off a corduroy shirt of mine that she uses as a warm layer to wear when she is cold.  After I took it off, she hung on to it, rather than letting me put it on the railing post, as usual.  I inferred that she had in her mind that there was a button that needed sewing back on that shirt.  There were no buttons missing.

I did not interfere with her plan.  I decided I would only intervene if she ended up with a needle in her hand and was hurting herself.  I stayed out of the bedroom as much as possible while she got out some balls of thread (probably more for cross stitching or something like that) and handled them for a while. I never saw a needle in her hand.  I just waited it out, helping a little when the thread on a couple of the balls got tangled.

I still don’t know exactly what was in her mind, nor do I know what went through her mind as she finally put the balls of thread back into the drawer and gave up on the plan.  I do know that it is painful to watch her confront the losses she has been suffering for so many years. The losses have been going on for twenty-two years in one way or another, sometimes more slowly than at other times.  Today was one of the times the contrast was especially obvious between the skilled sewing (made our first drapes, has made many quilts) she has done in the past and the inability to so much as get a needle, the thread and sew on a button — as well as the confusion about what was or was not there needing the sewing.

While I am busy complaining about the frustrating sleep patterns, she is busy trying to survive the loss of so much of what brought her joy and satisfaction throughout her life.  I guess I just need to finish this and get to bed so that I will have less to complain about.  So far tonight she has stayed asleep.  We will see how the rest of the night goes.

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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