November 5, 2009

Second Day After Hospital

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There is smoke coming out of the china cabinet!  You had better wash that bedspread, there is dirt all over it.   Is that cat real?  The cat question was a bit encouraging since she did not simply assume that it was real.

She accepted my offer to feed her when she just couldn’t seem to negotiate her bowl of “Little Bites” shredded wheat.  She had managed most of the yogurt on her own.  She again had trouble getting the straw to work as I tried to get her to finish the Miralax in water.  That is one of the most important items in her medication regimen.  At first she wanted to drink without the straw, but there was no way to get her head erect enough for the water to make it in her mouth.  In the hospital, when she was most disconnected at night, she couldn’t manage to suck on the straw, but blew through it instead.

There have been some moments of lucid interactions.  As she was lying down for a nap (about an hour after getting up), she mentioned lisiening to the “radio” meaning the book on CD that we were listening to on the trip.

By the way, she did sleep better after the applesauce last night.  It is a good thing.  I was running out of patience with the constant needs every few minutes.  There were more times up throughout the night, but there was enough time between them to get some sleep. She did get up pretty early this morning.

I am starting this post early in the day in hopes that I can get to bed earlier tonight.  Of course, my hope is that Mary Ann will be able to get to sleep at a reasonable hour and stay asleep other than a few trips to the commode during the night tonight.

It is now mid-afternoon.  It continues to be a very difficult day.  After her nap, during which I wrote the paragraphs above, we attempted lunch.  There was a piece of Glory Days’ Pizza left from yesterday.  That is her favorite.  I cut it up for her, and she managed a few bites of it with her fork.  Normally, she has no trouble eating small pieces of pizza with a fork.  Finally, I needed to help her. As she had yesterday, she tried to take a drink of Pepsi and set the cup down on top of the pizza on her plate, seemingly unaware that she was doing so.

She ate a few bites of her favorite green Jello, Cool Whip and cottage cheese salad that Mary brought yesterday.  After a two or three spoonfuls she was done.  I offered her a chocolate chip cookie.  She could not negotiate holding it and getting it to her mouth.  I helped her eat half the cookie.

We drove over to Doug and Marikay’s so that I could get a much needed haircut.  She sat with her head down during that time.  When we drove back by the coffee shop, I offered to use a buy one get one free Dairy Queen Blizzard coupon.  She just couldn’t answer intelligibly.  I concluded that she did not want any.  She would not have been able to handle eating it at the DQ, but we could have brought them home.

Moments ago, she wanted to go to the bedroom for some reason of which I was not aware.  When we got there, she wanted to get dressed for bed and was irritated that I didn’t realize what she thought was obvious.  I explained that it was only 3:30pm, and she recognized that it would be too soon to go to bed.

She is now listening to the book on CD that we started on our trip to Hot Springs.  What a dramatically different place we are now, less than a week from the time we were enjoying there.  I just asked if she had any pain or anything was hurting.  She said clearly that she was not hurting in any way.  Her head remains hanging, but she seems to be awake.  I don’t know if she is able to follow the book, but at least at the moment she is remaining in the chair.

I continue to hope that at some point she will snap out of it.  Right now, we would not be able to manage going out to eat in a restuarant, one of our main treats.  This is a whole new place in this trek, a place we would rather not be.

So far this is a pretty distressing day.  She is lying down again.  It is about 4:45pm.  I asked her earlier if it would be okay for us to go to the Parkinson’s Support Group tonight.  She connected with the question and said it would be.  Then a while later she fell while I was on two phone calls, one a survey from our Financial folks on the land line and another on the cell phone from our Son who is on vacation with his family in Colorado.  They had just seen an American Bald Eagle as they were driving along.  She decided she did not want to go to the Support Group meeting.  She said she needed to lie down.  There had apparently been lots of drainage from her mouth the last time she was napping.  I hadn’t noticed just how much it was earlier.  I changed the bed and have her bedding and pillow in the washing machine at the moment.

I am writing lots today, I suppose on account of the need just to talk about what it going on.  This is a new level of need.  At moments like this there is a sense of isolation that comes, recognizing that even with all the support we have from so many wonderful people, ultimately we are on our own as we deal with this.  No one can do it for us.  Others have lives full of needs that they must deal with.

I am, of course, confident of the Lord’s Presence.  Even the Lord experienced a sense of isolation.  It is helpful to recognize that kinship.

On a lighter note, I forgot to spring the live trap this morning after there was no raccoon to be found in it.  A squirrel managed to trip it while foraging for seed that had fallen into the trap.  Is he going to have a story to tell!  He moved like lightning when I opened the door to the trap.

There may be more to tell as the evening wears on, but I will post this now and write more later or tomorrow.

Addendum: Mary Ann got up from her third nap today just long enough to change into her pajamas.  The sheets needed to be changed again on account of the drainage from her mouth.  The washer and dryer are getting a workout.  Logic says that tonight will be a restless night since there were three naps today.  I guess my hope is that she is sleeping off the confusion and will soon return to normal. 

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 5, 2009

Day After Hospital Stay

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , |
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This has been something of an odd day.  Mary Ann woke up seeming fairly alert. Very soon, she shifted to a minimally responsive mode.  For much of the day, her head hung down on her chest.  She seemed ready to roll forward out of the transfer chair.  The bath aid when she was here, Volunteer Margaret (our Parish Nurse) when she was there or I needed to hold her shoulders up to keep her from going over.

She had a routine Mammogram this afternoon.  It was quite a struggle for two techs to get her positioned and hold her up for the x-rays.

She did a little better after a mid-afternoon nap, but resumed the head down position again after a bit.  Supper was a challenge for her, but she did get a fair amount eaten.

The hallucinations have continued.  I have been back and forth a number of times as I have been trying to write this post.  For the most part, she is saying things that don’t really make any sense.  She starts to say something and then stops, apparently losing track of it or recognizing that it makes no sense.  This has been one of the more challenging times in our journey.

I recognize the head on the chest problem from many of the posts of those in the caregiving spouses of those who have Lewy Body Dementia online support group.  Again, I am hoping that this is just a temporary dip into the Parkinson’s Disease Dementia.  Since we live so close to the boundary between lucidity and confusion, there is always a fear that we will move over that line permanently.  This particular type of dementia, is very unpredictable.  People can move in and out of lucidity and functionality seemingly at random.

There have been only minutes between needs for the last hour or so.  The last trip was for another visit to the commode, just five minutes after the previous trip to the commode.  As we were taking care of that, she asked if we were going home.  I said that we were home and pointed out her quilt hanging on the wall in the bedroom.  That seemed to satisfy her for the moment that she was in her own bed.

It is these times of utter confusion that are among the very hardest for me to handle.  The constant needs that cannot be satisfied since either the words make no sense or what she sees has no substance are very wearing.  Right now it appears that this will be another sleepless night filled with constant frustration.  Then again, maybe not.  The signs are not good at the moment.

Another trip to help her sit up — lots of words that made no sense.  She did agree that she wanted to go back to bed.  We will see how many minutes pass until her next need to get up for something indiscernible.

Five more minutes, another trip to the commode.  This time she wanted something to eat.  She decided to go to the table for a snack container of applesauce.  She took my arm to walk (our usual pattern), then she wanted to continue with the walker (very difficult for her to handle), then she recognized that she needed the wheels (transfer chair), and finally we made it to the table.  All those changes happened in the span of about twenty feet from where we started at the bed to the table.

She usually feeds herself when she has the applesauce, but that wasn’t working for her tonight.  I offered and she chose to have me feed her.  After some difficulty with her trying to get something off the bed, something that was not there (didn’t I see that pile of whatever it was), she is now back in bed for how long — I don’t know.  It is about 11:30pm.  She said that Zandra would soon be here.  Zandra is the bath aide who comes in the morning two days a week.  Zandra was here this morning.

She seems to be stirring again.  Let’s see what it is this time.

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 24, 2009

Stuck at Home Today

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

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

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

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

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

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

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

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

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

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

 

October 7, 2009

Days Added to Trip.

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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?

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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 28, 2009

Solutions Seem So Obvious!

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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 27, 2009

Two Nights in a Row!

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Last night was pretty tough — up and down all night long, then up this morning at 6:45am.  The same is happening as I write this and has been going on for two or three hours.  There is no point in my trying to head in to bed yet since the activity is constant at the moment.  She has been climbing in and out of bed for no apparent reason with only minutes in between. 

While, again, it is a function of the disease, it is no less frustrating.  The time that I have generally claimed as my own in these late hours after Mary Ann goes to bed is coming to no longer be my time.  Tonight I set upon having some spiritual renewal time.  There is a podcast of  the Saturday worship service at the Taize Community in France.  The music is the sort that draws the participant in with a beautiful simplicity.  The readings are done in at least three, often more, languages.   There is a calm and peace that seems to include in community people like me, listening from thousands of miles away. 

I had first read a weekly poetic devotion by Fr. Ed Hayes, whose writings have had much impact on my personal Spiritual journey.  The reading suggested lighting a candle.  I haven’t done it in a very long time, but I pulled out a votive candle, placed in on the worship center, a cabinet built precisely for that purpose, with stained glass inserts in the doors.  I lighted another candle in a tall walnut candle stand made by my Dad, many decades ago.  Next to that candle stands the Shepherd’s Staff made by a parishioner and given to me at my retirement, a symbol of my forty years of ministry. 

A small iron Celtic Cross stands on the cabinet next to the votive candle.  Joining the Cross and candle on the worship center is a large ceramic bowl with lettering and symbols painted on by the other Staff members and again, given at my retirement.  The words are the summary of the congregation’s sense of purpose, “Grow in Faith.  Share Christ’s Love.”  The bowl is a symbol of Baptism, in our tradition, understood to be that first encounter with the Grace of God, an act of unconditional love by God, initiating relationship. 

One other item on that worship center is a simple memento of a long-standing friendship with a small group of parishioners from the first parish  I served as pastor.  It is a small beveled glass case with found items, pine cones, dried weeds, parts of plants, stones picked up on a trip together to Alaska many years ago.

With the candles and the light from the computer screen only,  I began the Taize worship.  As I settled in enjoying the sensations that come with such an experience, the monitor screen that keeps me aware of what Mary Ann is doing as I sit here, revealed the activity.  Since she is at risk of falling when she gets up, needs help to use the commode, to manage the cup of ice water next to her bed, to turn over in bed, her activity demands my participation. 

I have stopped and started the worship a number of times, getting more frustrated each time, resenting the loss of the freedom to enjoy the experience.  There is a odd sort of irony, that the very thing that helps me maintain a healthy equilibrium in caring for Mary Ann, is doing the opposite tonight. 

As the Neurologist allowed, I have just this evening increased the dosage of Seroquel, which is the medicine that both reduces the hallucinations and helps with sleep.  The last increase was not enough.  It is too soon to assess the effectiveness of this increase.  Certainly, the hallucinations have not decreased yet, they continue to be on the increase.  Just moments ago she told me to be careful of the little girl when I was adjusting her sheet.  This morning when she first got to the table for pills and breakfast, as soon as I turned on the light, she tried to show me the blood on her hands.  I think she believed it to be from the raccoons or whatever biting her.  There was, of course, no blood. 

Last night’s post mentioned my need for better choices in the area of diet and exercise for the sake of this Caregiver staying healthy.  Last night, today and tonight have revealed again the difficulty of following through with such plans.  When there are nights like these that string together, it is just survival mode.   A steady pattern of changed behavior seems completely out of reach.   I am still reading the book offering helps for improving the diet part of the problem.  Maybe some changes can be folded into our days. 

As Scarlett would say, “I’ll think about that tomorrow.”

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 26, 2009

Caregiver’s Self-Care

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , |
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She is cute as ever!  We were dressed to the 9’s (whatever that means) for the church’s new directory pictures.  My contribution was to wash Mary Ann’s hair: the rest is in her genes. That combined with her ability to stop eating when she is full, has kept her slender and very nice looking.  As is apparent in the picture, I married up. 

I, however, have combined genes (Dad) and a seemingly uncontrollable appetite (Mom) to produce enough stored energy to last many weeks were I to end up on a desert island with no food.  It has, of course, gathered in the worst place for increasing the likelihood of numbers of diseases of the aging.  What is in my favor is a family history that for the most part does not include Cancer, Heart Disease or other life threatening diseases.  Most everyone in my immediate family has died of old age, or is still living.

That family history does not impress my Cardiologist.  Nor does it help me tie my shoes, or avoid the endless shrinking of clothing in my closet.  My shoes still fit!

On the spur of the moment, I went to a local Physical Therapy Center for a free consultation introducing a weight control program including both dietary counseling and an exercise program.  I liked everything about it (except the diet and exercise parts).  There was even the possibility of something that might benefit Mary Ann while I was doing the exercise program at the facility.  Then came the “other shoe” as they say.  The numbers took my breath away.

I need to stay healthy since I am not the only one who depends on my health and well being.  My health is more important than having a bunch of money in the bank.  One problem is that the bunch we have is of a size that a great deal of care needs to be taken when spending it.

There is a simile that I find very useful and use often.  Some things are like putting out a match with a fire hose.  I am not sure the amount I need to lose is worth that much money.  I would be right in the middle of normal on the weight chart if I were only six inches taller.

The truth is, the chart I am looking at puts me just past the line between overweight and obese — just barely, but obese.  Charts vary, and in some I am not categorized quite so harshly.  Nonetheless, clearly there is need for better habits and a lowered risk of problems emerging.

One of Mary Ann’s Volunteers has access to lots of health information, and has found a book that offers one approach to developing healthier habits.  She brought the book over early this evening.  The Cardiologist’s nurse had given me a copy of my blood work with the instruction to double the cholesterol lowering medication I am taking, Today, I received another copy in the mail, this time from our GP who got the same blood work report.  Today’s copy included a handwritten note, “LDL is too hight, needs to be around 100; work with exercise and diet.”  Of course in the last couple of weeks more studies have been published suggesting that belly fat increases the likelihood of getting Cancer, Heart Disease, Dementia, and Type II Diabetes.

A contributing factor to all of the above diseases is serving as a Caregiver.  The statistics are not good for those of us in a Caregiving role.  There are some things that cannot be changed.  I suppose common sense suggests working on changing those things that can affected by the choices made.

All of this comes after receiving the cooler from Omaha Steaks yesterday (a great sale), and enjoying the buy one, get one free Blizzard at Dairy Queen this afternoon (it was the annual anniversary gift for signing up online to join the Blizzard Club).

Rest assured, if there is any change in diet resulting from all this, or any exercise added into my daily activities, there will be whining in posts yet to be written.  Consider this fair warning! 

By the way, it feels good to have our Christmas shopping done for our children.  They will receive fresh new pictures of their parents to replace the old ones in the shrine.  We are so thoughtful.

It appears that tonight will be another tough one.  The raccoons are back in the bedroom.  Mary Ann wants me to call Animal Control.  I hope she can settle soon.  We will see what the night 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.

 

September 24, 2009

Embarrassed!!

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

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

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

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

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

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

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

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

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

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

Embarrassed?  Yes!  But we’ll live.

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

 

September 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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