June 1, 2009

Good Ideas for a Caregiver and Receiver’s Day

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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Volunteer Elaine has one rule for us: “Don’t read the book between my visits!”  She doesn’t want to miss any part of the story.  Elaine comes on a Sunday morning once a month for about three hours.  She reads from a novel she and Mary Ann have chosen.  This morning, she took Mary Ann in the wheelchair to the neighborhood vest pocket park a little over a block away.  The two of them enjoyed the flowers folks had planted in the back yards that border the park.  There were a couple of pairs of Bluebirds that entertained them.  When they returned, Elaine started reading.  The next Sunday morning that she comes, she will go on with the next chapter or two in the story.

Each of the Volunteers brings something different to the visit.  Sometimes just watching television with Mary Ann is what is needed.  Other times Volunteers will keep Mary Ann abreast of their own lives and families.  Some do a little ironing (or a lot).  Some will bring food and maybe make the meal while they are here.  All of them expand Mary Ann’s world.

There are times a Volunteer will come while I remain at the house, doing a variety of tasks, sometimes outside, more often in the office at the computer.  That option is especially helpful for Volunteers who might be new to the role, needing to get accustomed to helping Mary Ann, or uncomfortable with or physically unable to do some of the caregiving duties.

Of course there is a benefit for the Caregiver when there is a Volunteer.  As a retired pastor still worshiping at the church from which I retired, I have chosen to keep a low profile.  The church has an Evening Service, one that I started about a decade ago.  It has a comparatively small attendance, and the service is a little quieter and more contemplative than the morning services at which there are lots of folks of all ages coming and going.  The Evening Service is a friendlier setting for those with handicaps since there are fewer people to move through, fewer energetic little ones zipping here and there.

The Evening Service is the one that we have chosen to attend.  When there is a Volunteer available I use the Sunday morning time for solitude.  I usually drive to a lake about twenty minutes from here.  The lake is large and beautiful.  I usually find a spot there to do some devotional reading and just look around at the sights.  Today, after the time at the lake, I drove beneath the dam to a marsh that has been preserved for wildlife.  As I walked along a path beside the marsh, looking at and listening to the birds, as I listened to the occasional frog, watched the dragon flies, listened to the wind blowing through the tall grass, it dawned on me why their was such a calm and comfortable sensation washing over me.

When I was growing up, we lived two blocks from a swamp.  That swamp was my retreat.  I spent hours there, at least until my Mother figured out that I was at the swamp again.  I always went back, no matter how often I got scolded.  I still remember the willow switch stinging the back of my bare legs (unfortunately I was wearing shorts) with each step as we walked back from the swamp after Mom came down to get me.

The sound of Red-winged Blackbirds singing always takes me back to those idyllic days.  I am there again with frogs and cattails and tadpoles and water bugs, with the wind blowing through the weeds.

A few hours away is an essential element in healthy caregiving.  I need those times of solitude, times during which I have no responsibilities.  I stay as long as I choose in one spot and when I feel like doing so, move to another.  This morning I walked very slowly and soaked in every dimension of the experience.  The Great Blue Herons, Meadowlarks, Tree Swallows, Barn Swallows, Orioles, the sounds of the occasional frog, the wind in the nearby Poplar Trees (the greatest for making wonderful sounds when the wind is blowing), all got the time and attention they were due.  Each time I would stop for a while, more variety of sights and sounds would enter my awareness.  They were there before, but until I quieted myself and relaxed, I wasn’t aware of them.  Civilization made itself known through the sound of four-wheelers in an area made for them not far from the marsh.

Mary Ann and I each got a time this morning that was refreshing and renewing and entertaining.  After I came home there were some problems to deal with due to the fainting issue making its presence known.  After we got through that, I made lunch. Yes, I actually cooked!  It is another of those recipes so simple a caveman could do it (sorry Geico guys).

The recipe:  I opened a package of pre-cooked bratwurst sausages and browned them in some oil in a large pan.  After setting them aside I put a large quantity of onions (cut into fairly large pieces) and browned them in the pan with the drippings from the brats.  Then came a couple of spoonfuls of garlic pieces from a jar.  After that I added lots of slices of apples.  After cooking all that for a while with the lid on so that the apples cooked through and softened, I put the brats back in, opened a can of Bavarian style sauerkraut over the top and let the flavors mix and the liquid from the apples and kraut cook down a bit. On occasion I have added a little left over white wine into the pan to deglaze it.  I do that just because it sounds cool.  I guess it also adds a little sweetness. By the way, there is no need to add any seasonings to this dish.  The apples and onions and Bavarian style sauerkraut add plenty of sweetness, and the brats and sauerkraut add the saltiness and lots of flavor.

What made me proud today was that Mary Ann actually ate it and seemed to enjoy it!

After Mary Ann napped, we headed off to the Evening Service.  That was a corporate worship experience for us, and a chance for Mary Ann to get out into a setting that allowed some social interaction.  She did struggle a bit during the service.  There was one fainting spell, but it passed quickly.  We just did a little more sitting than usual during the service.

Getting out with people is another important need both for the Caregiver and Receiver.  It is tempting to stay isolated at home.  While that may be easier, in the long run it will take a heavy toll on both.

We picked up a strawberry shake from Sonic for Mary Ann on the way home.  I made myself a tasty peanut butter and jelly (Blackberry Jam) toast, we watched a little television, I watered the flowers and now I am writing this while Mary Ann is secure in bed — I can see her on the little seven inch baby monitor screen.

This is hardly exciting reading, but it is an account of some of the practical tools  that allow us to travel this journey with Parkinson’s in a way that doesn’t steal from us the quality of our lives together.

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

 

May 30, 2009

Falls Steal Joy: Plans are hard to Make.

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As we look back on today, it will be remembered as a good day.  Instigated by a birthday gift, we went out a couple of days ago and bought lots and lots of plants, plus potting soil with fertilizer in it.  Yesterday we bought the trowel and hand cultivator to help us do the planting. 

Today we did round one of the planting.  It was a very hot day, so the sweat flowed freely from both of us.  Mary Ann was in an old lawn chair, one of four, that serve as our deck furniture.  (No, kids, we still haven’t gotten decent deck chairs.)  There was a steady shower of little brown seeds from the neighbor’s River Birches.  The air was full of them. 

My job was to do the planting in the large pots on the deck and an area just off the deck next to the chimney, the only shady spot we have.  It seemed to take forever just to get everything ready to go.  We had intended to do this planting for the last three days.  I was doing a bit of procrastinating, but the timing of the daytime long naps filled the times that seemed most appropriate for planting.  When the need for a nap comes, Mary Ann almost collapses into the bed and sleeps for two hours, sometimes two and a half.  It can happen up to twice a day. 

It was a big deal to finally actually get started on the task.  Plans had been frustrated for three days.  Today we got started.  It took a while to prepare the three containers on the deck.   I always asked Mary Ann what she wanted to put where as I planted.   She had had a nap earlier in the day, but she was still having a little trouble processing any questions about what to plant where.  I would end up just saying how about this, and she would answer, yes.  It is what is called the executive function of the brain that is the first to go with Parkinson’s Disease Dementia (a Lewy Body Dementia).  Things went pretty well as I got the containers filled with the plants. 

Then came the area next to the chimney.  Our kids had dug up the sod, put down landscaping fabric, covered the area with mulch, made a few holes in the fabric and put in some plants a couple of years ago. 

I headed to the garage to get a couple of rakes so that I could move the mulch to get on with the planting project.  All I did was walk from the back to the front of the house, into the garage, grabbed the rakes and headed around the house to the deck again.   Just as I was coming to the deck I heard the sound of her falling into the gate by the stairs to the lower area. 

As happens so often, when I was out of sight, she got up to do something, which she could not remember when I asked her afterward.  The falls are disturbing when in the house on the carpet.  On a wooden deck, against an open gate at the top of some steps was frightening.  My mind went immediately to the possibility of a trip to the Emergency Room. 

Gratefully, there was no damage to be found other than to our attempt at just enjoying a normal activity.  It was frustrating to me that it was the moment I was not there to help that she chose to stand up and walk.  It seemed impossible to continue doing what we had planned for so long and were enjoying doing.  The only safe thing seemed to be to go back inside where there was carpet and where with the monitor I could get to her quickly if she got up.  That decision would have stopped in midstream something we wanted to do, something that needed to be done soon if the plants were to survive.

I chose to continue the planting by the chimney.  Another time would be no better in terms of risk.  As I went on with the task, Mary Ann started to get up again.  I went up on to the deck and asked her what she was doing.  She wanted to see what I was doing.  The rail and the Air Conditioner condenser were blocking her view.  I helped her stand and asked her to hold on to the rail while I went back down to arrange a couple of plants so that she could approve their placement.  Before I went down, I pulled the lawn chair behind her so that she could sit right down if she needed to.  When I got to the plants by the chimney, I looked down at them for a moment and heard her fall into the lawn chair.  She had fainted.  I am grateful that she fell into the chair and did not go down on the deck again.  I ran up to her to hold her in the chair until she regained consciousness.

After that, she finally seemed convinced that she should not try to get up unaided again while on the deck.  I was able to finish the planting.  There is more to be done tomorrow in a couple of other areas.  We will manage somehow. 

Our version of normal includes the recognition that we may not be able to do anything we hoped to do, planned to do on a given day.  Yesterday, I had things in the car and was ready to take her to get something to eat, when the need to nap came on with a vengeance.   When that happens, she just slumps over in the transfer chair with her head on the arm or the table next to it. Today, the same thing happened shortly before we were to begin the planting.  It was delayed a couple of hours. 

Tonight I took a break three or four paragraphs ago to help her use the commode.  I saw on the monitor that she was moving.  When I got to the bedroom, she asked me to close the door because a mother and two children were outside the bedroom door.  Her eyes were wide open as she looked at what appeared very real to her.  Apparently the Thursday people (as she once called them) chose to come on Friday this week.  Of course there was no one there. 

As she got on the commode, she fainted and was out for many minutes.  Then I got her up from the commode, and just in trying to get bed clothes pulled back up, she fainted again.  Since the commode is right next to the bed (I pull it behind her to minimize the travel distance), I was able with much difficulty to shift her so that she was sitting on the bed.  After a bit, I helped her stand again to finish pulling up her PJ’s, and she fainted once more.  I finally just laid her on the bed and pulled them up as best I could, arranged her on the bed, her head on the pillow, covered her and now she is sleeping soundly.   

Our version of normal is not really very normal by most people’s standards.  But as the years have gone by, I have realized that there are very many whose normal is either like ours or much worse.  As I read the posts on the caregiving spouses of those with Lewy Body Dementia, I can put our situation into perspective.  We have a quality of life that many would envy. 

The falls tried but did not steal the joy from our day.  Plans are hard to make, but can be changed now that I am retired and make no commitments.  Our normal is very liveable in spite of its challenges.  The plants will grow (hopefully), and their will be flowers on the deck to enjoy for weeks to come. 

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

 

May 28, 2009

A Record: No Falls for Twenty-Two Days!

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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It finally happened this morning.  I went to the kitchen just for a moment.  Then came the usual thump.  She was down.  The last time she fell, we had to go back to the Dermatologist to re-sew a two inch row of stitches, actually two rows, one deep in the wound and one pulling the surface of the skin together.  She had fallen directly on the wound and had broken the stitches.  The Plavix thinned blood ran freely.

It was just the other day that it dawned on me that we were then almost three weeks out from that drama, and there had not yet been another fall.  To appreciate the significance of that record, you need to know that Mary Ann has fallen multiple times a day, up to a dozen, in the recent past.  Up to that last disastrous fall, the pattern had been that falls came daily, sometimes two or three times.  On occasion there would be a day or two without a fall, but that was rare.

Mary Ann falls for a variety of reasons.  One of them is a symptom of Parkinson’s.  In fact it was one of the central symptoms that took her to the doctor when we first suspected that there was something wrong late in 1986.  She had pain and tight muscles in her left shoulder.  She had pain and stiffness in her left hand.  She would on occasion lose her balance and roll to the ground.  Maybe five years before that, we went on a couple of three day long church ski trips with other famiilies.  Mary Ann struggled especially with getting off the lift.  She always fell and had very much trouble getting up.  Finally, she just chose to stay in the lodge while we skiied.  Little did we know that a few years later the diagnosis of Parkinson’s would come.

That particular symptom of Parkinson’s cannot be corrected with a pill.  Physical therapy can help, but other than that there is no medicine that restores the balance.

A central symptom of the particular expression of Parkinson’s with which Mary Ann has been diagnosed is called bradykinesia.  Wikipedia has a good definition of bradykinesia: “Slowed ability to start and continue movements, and impaired ability to adjust the body’s position.”  When Mary Ann tries to start moving, the top part of her body may move forward while her feet refuse to move. Of course, when that happens, she falls unless there is an arm or a walker supporting her.

She seldom tries to use a walker any more.  She doesn’t have the physical strength to move it ahead of her.  When she did use it, she would often lean forward, body moving and feet cemented to the floor, leaving her in a very precarious position, hanging on to the walker for dear life.

With bradykinesia, a soft carpet may as well be wet cement.  Her feet just won’t move.  We have replaced all the carpet in the house with a short-knapped berber that is firm enough that she can move her feet (and we can roll the transfer chair), but soft enough to cushion her falls.  Most falls still leave a rug burn or a bruise or both.

When Mary Ann gets out of her transfer chair and tries to turn to walk around it, falls often happen.  When she tries to pick up something from the floor (now it may be something that is not actually there) she is, of course, vulnerable to falling over.

Since her stroke and the addition of the Parkinson’s Disease Dementia, a Lewy Body Dementia, Mary Ann has had some spatial perception problems.  Getting the utensil where she intends it to be when eating is a problem now.  When she is walking, sometimes she just does not perceive accurately where things are so that she can move her feet around them rather than trip over them.

In the last few years the Orthostatic Hypotension has been added to the mix.  That is a term that refers to the body’s inability to constrict the blood vessels fast enough to raise a person’s blood pressure to counteract gravity when standing up.  An adequate supply of blood is not pumped to the brain.  The result is called syncope, a fancy word for fainting.  It is not hard to figure out what happens next.  When people faint, they fall.

The time not so long ago when Mary Ann was falling up to a dozen times a day, it was the fainting that caused the increase.  She now takes medicine (Midodrine) to raise her blood pressure.  The medicine has helped some, but it has not eliminated the problem.  In fact the high blood pressure is taking a toll on her heart and her kidneys. There are often trade-offs that need to be made to maintain a reasonable quality of life.

Maybe now you can understand just why it was such a monumental accomplishment to make it twenty-two days without falling.  I am not completely certain why we managed to avoid falling for so long, but there are some things that seem to have potential for helping reduce the falls.

One thing is that Mary Ann’s last fall was pretty traumatic.  She has fallen hundreds of times and rarely done much damage to herself.  This time there was damage.  The return trip to the Dermatologist to be sewn up again was no picnic.  Mary Ann’s automatic pilot may have been reset to reduce her inclination to put herself at risk for falling.

Another thing has been my increased commitment to getting to her before she has a chance to fall.  I now spend less time in another room unable to see her.  I move more quickly when I suspect she might be on the move.

Since that last major fall, I have obtained the audio-visual monitor that allows me to see as well as hear her when she is lying in bed or sitting in her chair and I am at the computer.  I am now able to anticipate her getting up and heading out.  I can see her shifting or leaning forward, about to get up.  I am able to be there and help her before she falls rather than waiting for the thump and running to pick her up.

One recent change that may be having some sort of subtle impact on her stability is the new medication she is taking, the Exelon Patch.  It is intended to help with memory and alertness. To my knowledge it is not supposed to have any impact on the motor symptoms.  While I can’t put my finger on any identifiable dramatic change since she has been using it, she does seem to be doing better in most areas of functionality.  Since we live on a roller coaster of symptoms that come and go, sometimes very quickly, most of the time there is no clear reason for declines or improvements in Mary Ann’s ability to function well. There is no telling for sure how much, if any, impact the patch is having.

In the matter of this morning’s fall, Mary Ann, as is usually the case, did not hurt herself.  I still contend she could lead workshops on how to fall without hurting yourself.  I was upset that it happened, but no one can prevent the falls completely. As a full time Caregiver, I have to accept that. Most of all, I am still celebrating twenty-two days without a fall. Of course any decent celebration requires ice cream.  Two Pecan Cluster Blizzards from Dairy Queen beats a champagne toast any 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.

 

May 22, 2009

Meds: Can’t live with them; can’t live without them.

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , |
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Count them, twelve prescriptions and three over the counter medicines make up Mary Ann’s daily regimen.  That translates into Mary Ann consuming twenty-one doses of that collection of meds most days. 

One medication is not supposed to be taken with food.  Another that is taken five times a day at two hour intervals, alternating between one half and one full pill, should not be taken with protein.  Another prescription is to be taken every four hours, a whole pill for the first two doses and a half pill for the last.  It is not to be taken too late in the day or if she is going to lie down for a nap (a need that comes without warning).  One pill is taken half in the morning and half at night.  Another is kept in her purse at all times to be used only if there is chest pain that is not diminished by taking a Tums, suggesting that it might be her heart.  She has to lie down to take it so that she doesn’t faint.  One over the counter med is to be mixed with juice or water and taken Tuesday, Thursday, Saturday and Sunday. 

One prescription is intended to raise her blood pressure so that she doesn’t faint.  Another prescription is intended to lower her blood pressure and help control heart pain. 

One prescription, when she first took it immediately after diagnosis, helped her keep movement, rather than freezing up.  It ceased to be helpful after about three years.  After a decade or so hiatus, it was added again to help diminish the extra movements produced as a side effect of the main medicine she takes to keep from freezing up completely.  Those extra movements are what Michael J. Fox often presents.  They are called dyskinetic movements, or dyskinesias. 

Side effects of the two meds that treat the movement disorder aspect of Parkinson’s increase the susceptibility to hallucinations.   The disease process itself of the Parkinson’s and Parkinson’s Disease Dementia produce hallucinations.  That means there is also a prescription to help diminish the hallucinations.  That is a medicine which can produce a fatal side effect in the elderly.  You tell me just how old we have to be to qualify for that side effect.

The brain chemistry of Parkinson’s produces depression.  Wouldn’t a person with Parkinson’s have to be crazy not to be depressed once in a while?  There are some prescriptions to help with that chemical imbalance.  The side effect of one is to make Mary Ann sleepy, but some of the others make her restless. There is something added to help her sleep. 

Two of the meds thin her blood and help reduce the likelihood of her having another stroke.  The lesion on her carotid artery has a rough surface — not a good thing.  The list of side effects of most of her medicines includes the matter of dizziness when standing up.   That means they interfere with her autonomic nervous system, reducing her body’s ability to adjust her blood pressure quickly enough when she stands up.  The disease process of the Parkinson’s and Dementia are complicit in that nastiness.  The result of the low blood pressure is that she faints, increasing the likelihood of hitting her head and having another stroke or breaking the skin and producing a major bleed. 

The newest prescription is a patch to be put on her back daily.  It is intended to help her memory and alertness.  It’s main side effect is vomiting.  I can hardly wait!  One additional side effect can be diarrhea, but then listed among the side effects of most of the rest of the meds is constipation.  She, of course, takes a couple of over the counter meds to counteract the constipation.   

I could go on!

Every Saturday my to do list includes filling the pill container, four compartments for each of the seven days.  Mary Ann used to do that for herself.  There was a time when she had even more prescriptions and multiple doses of some of them.  When she was having trouble getting them all organized and in their spots without missing some, she devised a numbering system for the bottles.  By the way, the numbers go up to eighteen, seven more than she has now.  The job of filling the compartments is now mine, but I still use her system.  I have to follow a meticulous routine with bottles set out in certain places on the table if there will be any hope of my getting the job done accurately. 

Once all the compartments are filled, we are ready for the week.  Each morning, one of the day’s containers is snapped out of the holder.  The pills must be distributed into the pill cup for the morning pills, taken with yogurt (with active cultures), juice and maybe cereal.  Pills from the other compartments are transferred into two pill boxes with timers, one set for two hours and the other set for four hours.   The timers beep at ten minutes, five minutes and three minutes before beeping for a full minute to tell us the time has come to take the pill.  It is a miracle that I haven’t thrown then on he floor and stomped on them to stop the endless beeping.  The bed time meds are left for another cup to be set out at the end of the day. 

Do I even need to tell you what the frightening error was that I made one dreary morning a few years ago?  I was sleepy.  I got Mary Ann to the table and filled the morning pill cup — with the night time pills!!!!!  It wasn’t until she was pretty much out of it and back in bed that I discovered what I had done.  I called the Pharmacist and we worked through the implications and what to do.  Gratefully, the doses were all low enough that no damage was done.  After that experience, I now make sure that all the lights are on, my glasses are on, I look at the pill container three or four times, and Mary Ann always counts the pills and examines them carefully before she takes them. 

Every once in a while, someone asks me what I am doing now that I am retired.  After they regain consciousness from my having whacked them up side the head, I explain gently that Caregiving is a full time job. 

The pills are a wonderful gift.  They have helped provide a quality of life we could not enjoy without them.  It is tough to live with them, but we can’t live without them. 

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.

 

April 23, 2009

Caregiver Vacation Realities

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The following is quoted ( some paraphrasing) from some journaling I did the other night while on vacation at a Bed and Breakfast in Arkansas. We had spent a wonderful evening with some dear friends on the trip there.  It was our first night at the B&B. (Let me apologize in advance for the graphic detail – it seemed the only way to explain the challenges of caregiving.) It is a follow-up on my last post on travel preparations:

Ask me now if I would sound so bold and courageous about traveling! It is 3:35am. Mary Ann has had a usual middle of the night need to go to the bathroom. I got her into the transfer chair by the bed and rolled her as far into the bathroom as I could and transfered her to the toilet stool. Pants needed to be changed. That task involved the use of one of those flimsy plastic bags that refuses to open or stay opened to put the completely soaked pad (generic Depends) in. While sitting on the stool, she fainted (low blood pressure due to the Parkinson’s and medication side effects). She was out for two or three minutes while I held her on the stool – no easy task since at that point she is dead weight.

She came around enough to get her to stand up. While I was getting pad and pajamas back in place, she went out again. This time it was a major challenge. As light as she is, holding her up in a standing position when she is cannot assist is beyond the strength in this little sixty-six year old body. I tried to get her twisted around and on to the transfer chair. She slipped off on to the floor. Picking her up from the hard ceramic tile floor put my back in danger of damage. There were no other options that were available. I pulled her up and managed to get her into the transfer chair. I tried very hard to use my legs rather than back, since damaging my back would sabotage our system of survival.   There was a painful twinge.

When finally she was in transfer chair she was still not fully awake. The low BP leaves her brain an without adequate blood supply, so she is often minimally responsive after a major fainting spell. Since the bed was particularly high, getting her into bed so that she did not slide back on to the floor was difficult. I finally got her on the bed, twisted her into position, adjusted her on to her side and she is now secure and sleeping.

On the positive side of the fainting spells and only partial awakening, she has no memory of the events.  Sometimes she doubts that the spells really happened, but she seems now to accept it when I tell her about one.

In the journal, I added that she had had a noisy night before this episode. She was vocalizing and active, obviously having vivid dreams. One of the characteristics of people who experience Lewy Body Dementia is that they have very vivid dreams in which there is bodily movement and vocalizing. The normal dream process includes some sort of automatic disconnect of mind and body. LBD folks seem to lack that automatic disconnect so they tend to act out and speak out what they are dreaming. I have heard lots of laughing, crying, screaming and talking over the years.

Vacationing while having responsibility for someone needing full care is exhausting and frustrating. We spent a significant portion of the evening looking for a Baskin and Robbins Ice Cream store she was convinced she had seen more than once earlier in the day. There was none.

The day after the challenging night included the usual tasks that are added due to the presence of Parkinson’s in our household. As I describe them, I am embarrassed to talk as if they are a burden to me. Many of these tasks are well-understood by anyone who has been the primary parent of one or more children. Those responsible for little ones do many of these things routinely with little or no credit for doing tasks that are terribly difficult and draining. I understand far better what Mary Ann did as a stay-at-home Mom for two children. As I whine about the impact on me of things I do for Mary Ann, she has the primary burden of the disease and the resulting dependence on me to do them. She has more reason to whine than I have.

Morning duties included giving Mary Ann a shower, washing and drying her hair.  On vacation there is no bath aid. The routines at home, provide some security and order that helps us through the days. Vacations provide new challenges. After getting the shower and hair done, comes the medication ritual. There is an Exelon patch to be removed and new one put on. The old band-aid on one skin Cancer must be removed and a new one put on – Polysporin first. Then the other skin Cancer needs to be cleaned with Peroxide. Only after those duties are complete do I start my own morning regimen.

The breakfast as always here was wonderful. We arrived, I moved Mary Ann from her transfer chair to the chair at the table and put the transfer chair aside. Pills needed to be put in a container for her to take with the meal, then the daytime pills put in the timers and the timers set and started. Meals always include getting Mary Ann’s food arranged and prepared for her to eat. The omelet needed to be cut into bite sized pieces, the same with the sausage. What parent of little children has ever gotten to eat food while still hot. It just goes with the territory. For someone debilitated with Parkinson’s Disease, eating is a difficult task. The food tends to slide off the side of the place as it is chased to the edge. The food can end up in lots of unintended places. During mealtimes, my stomach is usually in a knot as I try to determine what to do and what not to do to help, as I watch things heading for a place that will create a mess for me to clean up. Certainly Mary Ann struggles to get meals eaten. She dislikes my help, but often allows it. Meals are more uncomfortable when eaten in a public setting.

The day included a self-guided tour that took us to see beautiful gardens, but demanded pushing the wheelchair for two or three miles on paths, sometimes paved and sometimes not, sometimes ADA approved and sometimes not. The circumstances allowed few options other than effort that got my heart pounding to a degree that left me wondering if I would have to call for help to make it back to the entrance. Today Mary Ann wanted to hunt for diamonds at a diamond mine around here. It was too far, so we ended up spending close to a couple of hours looking for quartz crystals, both of us in the hot sun, me digging through the gooey clay and Mary Ann, while in her wheel-chair, examining the discoveries .

Now that we are midstream in the trip, the question remains. Is it worth it?  It is much harder to handle things away than at home.  The barriers that must be dealt with are many.  We could stay home and watch television.  It would be so much easier.  A trip like this allows us to see things we could not see and do things we couldn’t do at home.  It gets us away, with new people.  It provides exercise and stimulation (sometimes more than we would otherwise choose).

Would we still do it?  Even knowing the realities, at the moment we would still choose to go.  We won’t be home for another two days.  I’ll let you know then if that is still my answer.

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.

 

March 29, 2009

Caregivers’, Carereceivers’, Volunteers’ Safety Issues

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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I got the dreaded phone call.  I was at work, Mary Ann was at home with a wonderful, capable Volunteer who had agreed to stay with her for a three hour shift.  Some days there were as many as five different people to cover all the time I was at work, which often included evening meetings.   Mary Ann had fallen in the bathroom and hit her head on the ceramic tile floor. 

Understand, Mary Ann is not the sort to just sit still and wait for someone to tell her when she can get up.  Her independence (a euphemism for stubbornness) has carried her through challenges any one of which would have taken a person with less strength of will.  Mary Ann got up to use the bathroom — a simple and necessary task.   Parkinson’s or not, Mary Ann can move like lightning.  She moves with a determination that says, don’t mess with me, I can do this.

Either before or after the task at hand, as she stood, Orthostatic Hypotension entered the story.  That is one of the many things we have come to know about.  We now know more than we ever had any interest in learning.  I could have gone to my grave without ever knowing what Orthostatic Hypotension is, and would have been content and fulfilled.  When anyone of us stands up, our blood pressure drops.  In an instant our blood vessels constrict to raise our blood pressure so that, among other things, our brain has enough blood to function fully.  OH is what happens when people who have a compromised autonomic response (in her case, medicine and disease process) stand up and the resulting blood pressure change is not corrected.  The person faints.  The doctors call it Syncope.  Somehow knowing the medical jargon makes me feel better able to deal with the multiple medical professionals on our team.  They may very well think it sounds silly, since I am sure I don’t always use the terms correctly. 

Here is the important part of this story.  Mary Ann fell on that hard floor, smashed her glasses into her face producing a bloody nose that would not quit.  What appeared worse than that was the giant hematoma on her forehead.  Because of the blood thinning character of Plavix, which she takes to help prevent another stroke, her forehead filled with enough blood to bring the protruding bump to the size of a softball. 

When I arrived home, she was still on the floor with her face down, blocking our veiw of the hematoma.  It became obvious as soon as I got her up off the floor that we needed to get to the Emergency Room.   

How can we keep our Loved One safe if we use Volunteers? 

First of all, we can’t!  We cannot keep our Loved One completely safe whether we use Volunteers, or paid Professionals, or never leave her/him alone.  Either we come to terms with that reality or go completely nuts, becoming useless to our Loved One and ourselves. 

With that said, we do have an obligation to use whatever means are at our disposal to create as safe an environment as possible.   This is not just about the safety of our Loved One.  What can we do to keep ourselves and the Volunteers safe?  If we hurt ourselves trying to help our Loved One we will cease to be able to give the care that is needed.  If a Volunteer hurts him or herself, we will feel responsible for our part in letting them be hurt, their lives will be disrupted, they will not be able to help your Loved One, and someone will be liable for any costs associated with their care. 

Are you scared yet?  Have you just phoned all the Volunteers and told them to stay home?  While we cannot guarantee no one will be hurt, we can make responsible decisions on what to do to minimize the likelihood of someone being hurt and at the same time prepare for that contingency. 

What follows are just a few of the things we have done over the years to address safety issues:

Mary Ann wears a gait belt at all times — something she hates.  A gait belt is just what is sounds like, a belt that is a help when she is walking.  I walk beside her (when I can get there fast enough) and put my hand lightly on the back of the belt.  Because it is at her waist, high enough in relation to her center of gravity, if she begins to get out of balance, it takes very little pressure to pull her back from going over.  We found a non-profit that makes them in a variety of colors, www.gaitbelt.com.  Gratefully, they are also very inexpensive.

After Mary Ann’s fall in the bathroom we began by putting down on the floor mats for children’s play areas. We now use them in the garage  to cover the area she is in when she goes out the door into the garage to get in the car.  We got ours at Sam’s Club, but here is an online link showing the floor covering:  http://www.matsmatsmats.com/kids/playroom-floor/soft-floor.html  We found a shower mesh floor that avoids the problem of mold due to moisture trapped under the mat, it resists mold.  It can be found at http://www.duragrid.com/shower.html  That is what now helps protects Mary Ann from hurting herself badly if she falls to the floor in the bathroom.  It looks good and is easy to install and remove for periodic cleaning.

We found that some of those people who served as Physical, Occupational and Speech therapists were willing to give their time to come to a gathering of Volunteers to demonstrate how to help Mary Ann without hurting her or them.  Once in one of those training sessions Mary Ann got on the floor and the therapist showed how best to help her up.  They were willing to demonstrate simple activities that could be done with Mary Ann to provide appropriate mental and physical stimulation.   

We put together a booklet filled with all sorts of information.  It includes contact numbers, whom to call for help getting her up if she falls, what hospital we use, directions to the house that may be given to the Emergency folks if 911 must be called.  The booklet is to go with her to the hospital, so it includes the names of Mary Ann’s doctors, a current list of medications, her Living Will.

It also includes a description of what to do when Mary Ann gets up to walk, what to do and not do when she begins to fall, what help she needs with personal tasks.  It lists things that are normal for Mary Ann but might concern a Volunteer, dyskinetic (involuntary) movements, dizziness, confusion. 

We talk through with new Volunteers what to expect.  We assure them that we understand that none of us can control what happens, to help relieve them of concern that they will be held responsible if she falls and hurts herself.

Finally, we have obtained an umbrella insurance policy to help provide for the contingency that someone might be hurt trying to help Mary Ann.  With so many people in and out of the house, there is a vulnerability that comes. 

After the fall, we took Mary Ann to the Emergency Room.  Even though she had fallen flat on her face on a ceramic tile floor from (apparently) a standing up position, she broke nothing, not even her nose.  It took hours each of two days to get the nosebleed to stop.  When the packing came out a few days later, to our surprise, it did not start bleeding again.  She did not have a skull fracture but was pretty confused for a few days.  We did need to get a new pair of glasses.  Mary Ann seems to be made of iron.  She has fallen multiple times, sometimes more than once in a day, but has broken no bones. 

Safety is an issue whether there are Volunteers or not.  Our job as Caregivers is to do what we can to create as safe an environment as is reasonable given the place in which we live, the resources we have and our Loved One’s need for some independence.  Having done that, it is time to let go of the constant terror we could choose to embrace.  Life is too short to waste living in fear.  Live safely, but live. 

What are some things you do to make your Loved One as safe as possible?  Do you use Volunteers?  Where do you find them?  How do you prepare them?  How is it going?

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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