May 31, 2009

Caregivers: Legal Issues

Posted by PeterT under Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , |
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A few days ago there was a thread of discussion on an online group I am in for Caregivers of spouses with Lewy Body Dementia.   There were all sorts of issues that surfaced as people talked about stepchildren who seemed unwilling to show real concern for their parent who has dementia and his/her caregiving spouse.   In some of the cases there was very active interest by those same stepchildren in the disposition of the estate when that time would come. 

That conversation brought up lots of legal issues that need to be dealt with whether or not there are any problems in the family.  This is one of the times I am especially grateful that we have a healthy family with a deep and genuine love combined with intellegence and common sense.  It is hard to hear about some of the ugliness that can emerge when money issues trigger a mindless greed in people. 

One of the dynamics of dealing with dementia is that, since the executive function of the brain ceases to work properly, the ability to make well thought out decisions ceases.  Gathering and processing information as is necessary for making good health decisions or financial decisions, is no longer possible, at least consistently. 

With dementia of any sort, the progression of the disease makes it important to act sooner rather than later in planning for future contingencies.  With the Lewy Body dementias, the roller coaster pattern of times of great lucidity mixed with times of the inability to track thoughts, makes it especially important to make long term decisions and set in motion processes that will insure that legal matters will be in order no matter what comes.  The goal is first of all to keep all the family resources available for whatever care is needed for the one who cannot care for him/herself.  Secondly, it is to provide the usual care in estate planning so that the wishes the deceased are reflected in the disposition of their possessions.

While many of the legal issues are related to the time of death, some are matters of concern for the living.  All of us, no matter our age, need a Living Will.  We need people designated to make decisions when we are not able to do so for whatever reasons.  For a Caregiver spouse, the question is, who shall that be.  If legal documents designate a spouse who has dementia as the one who has Durable Power of Attorney for Health Care Decisions, that spouse will be put in the position of carrying a decision-making weight beyond their ability.   If that spouse is appointed attorney-in-fact for all the rest of the decisions that need to be made through a Durable Power of Attorney, the same will be so.  There will be a vulnerability to manipulation by others who may not be a trusted part of the immediate family when major decisions need to be made.  All someone would need to do is obtain a signature in front of witnesses, and the wishes of the Caregiver and spouse could be frustrated.

The way to proceed in the area of all these legal matters is to locate a reputable Attorney who specializes in Elder Law, preferably a member of the National Academy of Elder Law Attorney’s, Inc.  (NAELA).  Powers of Attorney should name someone completely trustworthy who is committed to the wishes and the well-being of the Caregiver.  The transition from spouse to Son or Daughter or other trusted family member can be difficult for the one suffering from dementia.  It is essential to make any needed changes with the full knowledge and participation of all those impacted by those changes.  If no one in the family can be found to serve as the agent for the Powers of Attorney, a Guardian may be chosen.  Often the court has a list of people who can serve in that role. 

Then there is the issue of how a Will should be structured when there is a spouse with a form of dementia.  The challenge comes if the Caregiver dies before the spouse with dementia.  If the all the assets transfer to the spouse with dementia, as was so with the Powers of Attorney, that spouse will have decisions to make that he/she is no longer able to make, and he/she will have a vulnerability to manipulation.  If all the assets are in the name of the spouse with dementia, they are all subject to being drawn down if nursing home care is needed. 

There are a number of options that the Elder Law Attorney can lay out for the Caregiver and Spouse.  If there are trusted children, it is a fairly simple matter to assure that all the resources will be used for the spouse with dementia should the Caregiving spouse die first.  All the assets are put in the name of the Caregiver with the children as beneficiaries of the estate.  Again, an Elder Law Attorney needs to be consulted rather than taking advice written in a blog. 

Since beneficiary designations on insurance policies, IRA’s, pension plans (and any other instrument with a beneficiary designation) go directly to the beneficiaries listed and take precedence over anything written into a will, all beneficiary designations need to reflect the current wishes of the Caregiver and spouse. 

When there is a spouse with dementia the legal issues  are complex, but ignoring them could result in some very unpleasant consequences, especially if the Caregiving spouse predeceases the spouse with dementia.  The sooner decisions are made, the better.  

Again, the key to making good decisions and formulating plans that are legal, clear, and reflect the wishes of the Caregiver and spouse, is to find a reputable Attorney versed in Elder Law in your state. 

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.

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , |
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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 20, 2009

Caregivers: Information Overload — Or Not

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , |
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There was a four night special on Alzheimer’s Dementia on HBO about a week ago.  A number of those who are in the online group for casegiving spouses of those with Lewy Body Dementia had no interest in watching the series.  Why?

We don’t subscribe to HBO (too tight to pay for premium channels), so it was not an option for us.  I don’t know whether or not I would have watched it if I could.

Especially when I was in the thick of ministry in a demanding parish, I had no interest in watching soap operas or reality television shows.  One reason was that I experienced on a surprisingly routine basis drama in people’s lives that matched or exceeded what was portrayed in the television stories.

One of the characteristics of the pastoral ministry is that due to its nature as a helping role and the concomitant vow of confidentiality, people often revealed what might be called their “dirty laundry.”  Sometimes they confessed their darkest side in search of forgiveness.  Often they revealed the worst of their family secrets. There are many revelations that I will take to my grave.

It was hardest to deal with revealed secrets that I was bound to keep even when interacting with other family members who were not privy to whatever it was.  I heard things that would not have made the latest soap opera because writers would have considered them too hard for the audience to believe.  You know those things we assume could never really happen, at least not to anyone we know?  They are happening in the lives of people all around you, people you could never have imagined could be involved in such behavior.

Having that window to the reality in which I was living, I neither needed nor wanted to immerse myself in some fiction attempting to provide me with a vicarious experience of the dramatic.  Real life provided enough drama.

The reason those online Caregivers were not interested in seeing a special on Alzheimer’s Dementia (AD), is that they are living the drama themselves.  For that group it is Lewy Body Dementia (LBD), which is different from AD in some respects.  The confusion and memory problems and hallucinations come and go, sometimes in minutes for those with LBD.  There may be a decline that is followed by a return to  former alertness.  There is a greater sensitivity to a number of medications, sometimes the very medications needed to control some of the symptoms of the disease.  Parkinson’s or Parkinsonism is often a part of the LBD experience.  There are very many characteristics that AD and LBD have in common.

Those who live with AD or LBD or PDD (Parkinson’s Disease Dementia – a Lewy Body Dementia that emerges after Parkinson’s has already been diagnosed), do not necessarily want to watch their struggle on television.  If anything, they want television to provide them some escape from Dementia World.

I have a thirst for information that might have led me to watch the Alzheimer’s Project on HBO, if we had HBO.  Information helps me objectify what we are going through.  Information takes away some of the apprehension because it demystifies the Disease.  It reduces its power to intimidate.  It becomes more of a matter of fact part of our lives, less able to blind side us with surprise attack of some sort. Of course anything can happen at any time, without warning, but at least we know what some of those “anythings” are.

It is fine to cut out articles and inform Caregivers of programs about the disease their Loved One is battling.  Just don’t be offended if they don’t read it or watch it.  They may be on information overload just dealing first hand with the disease.  They may, as do I, find the information a helpful tool for bringing the disease down to size.

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 15, 2009

Caregivers Appreciate the Chance to Give Care!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , |
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Maria’s George died this evening.  Others are not far behind.  It is such a privilege to read the posts of those in the last days and hours of life with their Loved Ones.  The Lewy Body Dementia Spouses’ group is candid about what they are going through whatever it may be at any given time.  It is a help to the rest of us to hear straight talk with all the details from others at different places in the journey with Lewy Body Dementia.

Each death that is recounted brings lots of responses from others.  There are many celebrations that the battle is over and the Loved One is finally at peace. There is relief that the Caregiver Spouse is also free from the clutches of the Dementia.  There are from the same people words revealing a deep sadness that the time of Caregiving is over.  One spouse giving care during those last days and hours wished she could just keep ministering to her husband without ever having to give him up.

As that fond wish to continue to care resonated in my thinking, I realized just how true some words were that were spoken by a friend when I retired.  He has retired and cares for his wife who has had ALS for many years.  He observed what an honor it is to be able to become a full time Caregiver.

As so many in the online group have died in the past months with more moving into their end times, I recognize just what a privilege and honor it is to have time with Mary Ann.

We spent a good portion of the day driving in the car.  We headed out to pick up a friend and then drove to the studio of our favorite potter.  The studio is in a tiny Kansas town about an hour away.  We picked up a couple of pieces while we were there.  One was a chili bowl with a handle and high sides.  Our hope is that the high sides will keep the cheerios from sliding out of the bowl as Mary Ann chases them with the thick-handled spoon.  We left with his artisans a plastic plate we had purchased to make it easier for Mary Ann to push food on the fork or spoon without the food slipping off the edge of the plate.  Our request is that he make a ceramic plate shaped like the plastic sample painted with glazes matching a couple of other pieces he has done.  There is no reason that we need to leave aesthetic considerations behind when we get adaptive devices to make Mary Ann’s life a little easier.

It is her birthday tomorrow.  The bowl will be her birthday gift — surprise, surprise! We have come to the age at which birthdays diminish dramatically in interest.  At least that is how I rationalize my lack of creativity in celebrating them.

We drove through an area of the Flint Hills.  The green of the spring grass, recently watered by rain showers, glistening in the sun was breathtaking.  Birds were flying, cattle grazing, van passengers soaking it all in.

As I think about those who have lost the ones for whom they have been caring, i realize more vividly than ever just how great it is to have this time.  When I am mid-task, doing something I don’t particularly enjoy, irritated at Mary Ann because she seems to be fighting against the very thing I am doing to help, it is easy to weary of it all and wish it was over.  I am grateful that it is not over.  I am grateful that we can sit at Panera’s and have a Bear Claw and a cup of coffee.

We have had a couple of tough nights in the last week or so.  Those are the nights when she is restless, needing some sort of assistance two or three times during every hour of the night.  It is not so much the tiring night that is the problem but the two days of increased hallucinations and confusion and long daytime naps that inevitably follow.  Tonight again, there was concern about the comings and goings of the Thursday people. We went through the skin Cancer removal, subsequent fall and repair of the wound, all in the last ten days or so.  Mary Ann has struggled more with spatial issues and dexterity resulting in her need for more help in getting food of the plate and into her mouth.

In this same last week we have had some very good days, eating out with some new friends, running errands, spending time at the library, having ice cream treats, going to see the Star Trek movie, enjoying a helpful Parkinson’s Support Group meeting, experiencing our own little meals on wheels program as  couple of great meals were brought over, a melt-in-your-mouth four layered chocolate cake with fluffy sweet white frosting covered with shredded coconut being delivered.

What I intuitively recognized in those thirteen seconds as we sat at McFarland’s restaurant September before last is absolutely true.  We needed time together while we have it.  As others spend their last days and hours concluding their journey together, it becomes crystal clear.  I have an honor, the honor of being Caregiver to Mary Ann.  I am grateful not to have missed the chance.

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 10, 2009

Caregivers: Audio-Visual Monitor Helps

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , |
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As I sit here at my computer writing this post, Mary Ann is in bed and secure.  Even though the door is closed and the bedroom is in another part of our small townhome, I can see her in bed.  Sometimes electronics actually help!

This afternoon we made a stop at Babies R Us.  I ran in and purchased an A-V monitor set.  It includes a camera, video display unit and a portable audio-only unit that can be clipped to a belt.  What is especially important for me is the size of the video unit.  it has a seven inch screen.  For me that means that as I look at the computer screen, out of my peripheral vision I can see her movements.

After ending up back at the Dermatologist’s office to sew up again a large incision that had broken open completely when Mary Ann fell directly on the stitched area, I decided that I needed to either be joined to her at the hip or find some way to see when she gets up from the chair even if I am not in the room.

I called the manufacturer before I bought this set to determine how to obtain a second camera.  That way I can have one in the bedroom aimed at the bed and one in the living room aimed at her chair.  On Monday, I am going to check on whether or not I could buy another kit (the cheaper one without the audio-only unit) and have two screens as well as two cameras.  I would like to be able to have one in a spot in the kitchen that will allow me to see her from there or from the dining room table, providing even more security. After she was in bed this evening, I was at the dining room table and barely heard her calling.  She had tried to turn over in bed and ended up on her knees on the floor next to the bed.

It just worked!  As I was typing the previous sentence, I saw her moving around.  I checked on her and found her trying to turn over to face the opposite direction.  I was able to help her.  Her Parkinson’s has taken from her the ability to move freely in bed.  I would rather help her when she begins the task of moving than wait until there is a problem that might result in damage.

This new monitor will replace the audio-only baby monitor that we have been using.  One problem for us with audio only is that her voice has gotten so low in volume that it is very difficult to hear her calling over the sound of the television in the bedroom.  The television is Mary Ann’s version of a night light.  While having the television on in the bedroom is not recommended by those who study sleep patterns, it is an important part of Mary Ann’s world.

The security that the A-V monitor provides is not just Mary Ann’s security.  The prime goal is to protect Mary Ann from harm.  Not far behind that goal is the goal of my freedom and peace of mind.  When she is out of sight, I am always aware of her potential for getting hurt, mostly from popping up out the chair and ending up on the floor.  I can feel the stress relief that comes with having her in view when she is in another room.

One of the heaviest burdens of Caregiving is the loss of freedom to move about at will.  When she fell, I had just gone into the kitchen to get something for her.  To lose the freedom to move about the house would be intolerable.  One of my primary distractions when trapped at home is the computer.  I need the freedom to head down the hall, away from the television and concentrate on what I am doing at this desk.  This monitor, as long as it continues to work, gives me that freedom without sacrificing her safety.

There is no way to guarantee that Mary Ann will not fall and be hurt.  What this does is simply add to the practical tools for creating as safe an environment as I can within the limits of available resources.  While we cannot control what happens, we do have some control.  This is another way to use what power I have to help create a safe environment for someone no longer able to keep herself safe.

The monitor I chose is a Summer Day and Night Color Flat Screen Video Monitoring System.  The model number is 02500.  It is available at Toys R Us, or Babies R Us.   If you want to check it out, the web site of the manufacturer is, http://www.summerinfant.com. There was also a monitor I checked on that has a smaller screen but has optional software that allows the monitor to be checked online.  That one is called a MOBI Bundle Monitoring System and Internet Kit.  The website at which I found it was http://www.ActiveForever.com.

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 6, 2009

A Caregiver’s Fear Realized – Hurt in a Fall

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , |
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One of my fears about falling was realized this afternoon.  We live in a very narrow margin of functionality.  We slipped outside the margin for a time today.  The result is an apparent need to change a pattern that has been allowing both Mary Ann and me moments of freedom from being tethered to each other. 

Yesterday morning was the procedure to remove another in a series of Basal Cell Cancers that have been appearing on Mary Ann’s back and upper chest.  The procedure was done in the Dermatologist’s office.  We like him.  He seems to be very committed to the field and always upgrading his knowledge and skills. 

His office, however, is right from the 1950’s.  It is very small, a narrow hallway leading to tiny rooms with pocket doors, bathrooms barely able to hold one person standing up, let alone somone in a wheel chair.  There is a nice flat screen television in the waiting room, among the old furniture.  The equipment doesn’t always work, but it is adequate, and procedures are done well.

The spot on the back of her shoulder was not large.  To guarantee that the perimeter of the patch of skin removed was clear of Cancer cells, a pretty large area of flesh was removed.  Each time a procedure has been done, I have watched each step.  The rooms are very small, so I always have an unobstructed view. 

It is always a surprise to me to see the size of the string of stitches when the the wound has been sutured.  In this case, it was at least a couple of inches long.  He sutures the lower edge of the epithelium, deep in the hole left after the circle of skin is removed.  That is a very tedious process, including a number of steps with each of the many stitches.  Then comes the suturing of the surface edges.  The round opening is pulled together into a line, not exactly straight, but close.  Again each stitch takes multiple steps. 

He made a point of closing the wound tightly since Mary Ann takes Plavix and aspirin.  The doctor observed that Plavix actually sometimes gives surgeons more trouble that Coumadin, a much more powerful blood thinner.  He wanted to be sure there would be no problem with bleeding. 

The day went well after the surgery.  Even though we had been given suggestions for dealing with pain, Mary Ann reported no pain.  The doctor called last evening to ask how she was doing.   There were no problems. 

Today was a good day in many ways.  Mary Ann went to her weekly small group meeting at church.  I was basking in the possibility of a water problem in our back yard turning into a beautiful garden and water feature.  Most importantly, some gossip came my way — good gossip.  The sadly empty building that used to be our Baskin-Robbins ice cream place — yes, I said ours, by squatter’s rights — may eventually open again. 

After lunch, I actually managed to do some cooking using a very complicated recipe.  Here it is:  Brown one large package of country style boneless pork ribs in a large frying pan, then transfer them to a crock pot, add a bottle of KC Masterpiece barbecue sauce and cook them forever.  The recipe is came to us from Larry and Jolene, when they brought over a huge and sumptuous meal.  My creative addition to the recipe is to open a couple of cans of beans and add them to the crockpot a half hour or so before eating.  Enough of the culinary diversion.

Mary Ann wanted a snack.  We had some ice cream.  She ate part of it and decided there was something in it.  I find those hallucinations to be especially annoying, since once they appear, the only alternative is to throw away perfectly good food for no good reason.   An hour later, Mary Ann popped up out of her chair, and as I suspected had decided she needed another snack.  I couldn’t pass up an comment on the last snack’s fate, and then I headed for the kitchen to see what I could find for her. 

I left her standing beside the transfer chair.  As soon as I got to the kitchen, I heard the familiar thump of her falling.  It was in an open carpeted area.  She hit nothing that might hurt her.  Normally, such a fall is just routine.  Not this time.  She landed directly on the shoulder that had been stitched up yesterday morning after the surgery on the skin Cancer. 

I knew it would be so, and as soon as I got her to the bedroom to look at it, my fear was confirmed.  The blood was running.  I headed for the case we have filled with first aid supplies we have gathered after past experiences like this.  I got a thick surgical pad and some tape to try to contain the bleeding until we could get back to the doctor.  The tape I had  (too narrow) combined with the awkward location of the incision resulted in blood seeping through to her clothing in spite of my best efforts. 

 I called the doctor’s office and was advised to do the obvious, bring her in.  The doctor had to send home a patient who had been stuck and prepped for a procedure because Mary Ann’s wound could not wait.  She had done something he had never seen before in his career (started medical school forty years ago).  She had torn open the two inch stream of stitches on the top and deep within the wound.   He had to start over completely.

The afternoon grew in complexity as it went on.  The doctor had sent home the other patient prepped for a procedure.  As he and two assistants were doing a cluster of preparatory tasks for Mary Ann’s repair, the doctor’s preschool-aged grandson came running down the hall.  He poked his head in.  He was not put off at all by what he saw.  Obviously he had wandered in on procedures before.  What added to a sort of chaotic tone that was developing was that the little boy’s mother. the doctor’s daughter-in-law came down the hall holding a cloth to her forehead.  She had run into a door and was also in need of stitches. 

The doctor left Mary Ann to attend to his daughter-in-law.   The assistants continued the prep, obviously a little unsure of how to proceed.  During that time the two assistants were sharing with each other their concern that they both had to leave and could not stay much longer.  One  had an appointment to take her two year old horse to be broken.  The other had to pick up her preschooler (who happened to be attending the preschool at the church from which I retired last summer). 

The doctor had done some preliminary work on his daughter-in-law so that she could wait until he was done with Mary Ann for her stitches.  When he returned, the imminent departure of his two assistants became clear.  The word went out to the office manager who had been with him for much of his practice to scrub up so that she could take over when the assistant’s left. 

Through all this, every time we checked with Mary Ann, she said she was fine.  She lay a long time on that table as he redid the entire suturing process.  It was long and tedious.  As time went by we all began to appreciate the craziness of how the afternoon was going.  They all commented on how uneventful the day had been up until we injected some drama into their day.  I told them that if it was okay with them, we would opt out of any future need for excitement being added to their day. 

The moment, Mary Ann is in bed.  As a her Caregiver, I have a dilemma.  First of all, I bear responsibility for what happened.  Had I been there with my hand on her gait belt, I could have prevented the fall.  Secondly, I was not calm and reassuring after it happened.  Instead, my frustration with the situation spewed out of my mouth.  Gratefully, I moved quickly and got done what needed to be done.  My dilemma is the implication this has for how I go about my Caregiving task. 

I have felt free to be in the kitchen for a time, go down the hall to my office to be at the computer for short times during the day,  go to the end of the block to get the mail.   At least until the stitches heal fully, this episode suggests that freedom no longer to be an option.  Mary Ann simply cannot keep from getting up and going.  I need to be there immediately to offer an elbow or put my hand on the gait belt. 

Tomorrow, I need to follow through on getting an audio-visual monitor from Babies R Us, or wherever I can find one.  If I can keep the receiver with me wherever I am in the house, maybe Mary Ann and I will not need to be joined at the hip every minute of every day.  That much closeness would all but assure both of us going completely crazy.   It would not be a pretty sight.

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 5, 2009

Hot Flashes come with Parkinson’s Disease

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , |
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I just closed the back door, the window in the dining room, the front door, the garage door, and the door between the house and the garage.  From late fall through early spring, this is pretty much a daily routine.  Yes, even in the dead of winter (which is not all that big a deal in Kansas), the doors and windows are opened each evening around supper time. 

During the first fifteen years of Mary Ann’s Parkinson’s diagnosis, no one told us about the hot flashes.  When I asked about them, there was only a blank stare.  Mary Ann went through all the usual hormone treatments — multiple doses.  Nothing worked.  Finally, she stopped taking any hormone therapy.  It just made no difference. 

Finally in just the last few years we have heard sweats listed among the non-motor symptoms of Parkinson’s.  After a time of feeling irritated that no one had mentioned it before and lamenting all the misguided efforts at trying to treat them, we were relieved to just to know that it is part of the Parkinson’s gifts to Mary Ann.  They are no easier for her to endure, but at least we are no longer wasting our time looking in all the wrong places, trying to find some elusive solution to the problem.

I had heard about hot flashes long before the Parkinson’s.  Since Mary Ann was diagnosed so early in life (45), she went through the normal menopausal hot flashes.  The hot flashes, the sweats, continued long after menopause had completed its transition.  They have never ceased.  As I have felt the heat and changed soaked clothes and wiped the sweat running down her neck, I have come to recognize hot flashes to be much more than a minor inconvenience.  When they come in full intensity, Mary Ann looks as if she will burst into flames any moment.  She radiates heat that can be felt from inches away, as if she were some sort of biological space heater. 

There was a time in the progression of the Parkinson’s when if we had been asked, we would have responded that the hot flashes were the hardest part of the disease to endure.   

When the almost daily hot flashes come on, I need to respond quickly.  If Mary Ann happens to have on a long-sleeved top, it must come off immediately.  She is usually dyskinetic at the time, so changing clothes is no small matter.  Arms and legs are twisting this way and that.  After clothes are changed, the back door, the windows, the front door, the door to the garage and the garage door must be thrown open.  The colder and windier it is outside, the better.  Sometimes I get a wet wash cloth to put on the back of her neck.  Occasionally, she has ended up in the shower trying to cool down. 

As you might guess, summers in Kansas can be pretty tough at hot flash time.  I recognize that the general wisdom is to keep the thermostat no lower than 76 degrees when the AC is on, preferably 78 or 80.  Ours has to go down to about 72 until it feels like a refrigerator when the hot flashes kick in.  The AC works far too slowly to give much relief.  Eventually, either that round of sweats ends or the AC takes the edge off so that it is at least bearable.  Oddly, at other times, Mary Ann can be very cold, hands frigid. 

As a Caregiver, not only do I need to be ready to move quickly to cool her down when the hot flashes come, I need to have nearby appropriate layers for myself.  When it is in the twenties outside with a wind chill in the teens, I need to add layers to keep warm. 

Some of our most harrowing moments have been times that a hot flash has hit while we were driving.   While traveling the Interstate at 75mph (maybe a little more) trying to reach the passenger seat in a van with front seats separated by a console, to take a jacket off a seatbelted passenger who is broiling in her own sweat is a terrifying experience. 

It is not only Parkinsonians who have to deal with the sweats.  Many of those who are in the Spouses of those with Lewy Body Dementia online group talk about the sweats, asking if anyone has found some way to control them.  To my knowledge, no one has come up with a solution, even by asking his/her Neurologist.  

The sweats, the hot flashes, are just part of the deal.   They come after the Parkinson’s has been with the family for some years.  As far as I know, no one has pinned down the specific cause of the hot flashes.  Very many of the problems that come with Parkinson’s Disease, Parkinson’s Disease Dementia and Lewy Body Dementia do not reveal their etiology, they are reluctant to tell the story of their origins.  So many of the most troubling problems have their roots in both the disease and the medications used to treat the disease. 

Even the most expert in Parkinson’s Disease will admit that many of the motor and non-motor symptoms seem to emerge from some elusive combination of the disease process and long term side effects of the medications.  Without knowing a very specific cause, it is pretty much impossible to find a treatment to control those symptoms. 

As with so many of the troublesome additions Parkinson’s has brought into our lives, the sweats, the hot flashes are here to stay.  They refuse to be diminished by any treatment.  We are left to adapt the environment to accommodate their presence.  So, we open doors and windows when that will work, and we turn the AC down when outside air seems hot enough to initiate combustion. 

Hot flashes or sweats often do come at some point in the progression of Parkinson’s Disease.  Somehow knowing that to be so makes it easier to accept them and spend the limited time and energy we have figuring out how to adapt our environment quickly to diminish the discomfort those hot flashes bring. 

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 4, 2009

Caregivers are often Confused

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I don’t know.  I don’t know whether we are in a time of decline.  It is beginning to seem that way.  I just don’t know.

We had a good day and a difficult day all at the same time.  It was a good day because we got to see our Granddaughter sing in a choir concert this afternoon.  She sang wonderfully — something very important to this Grandpa whose life revolved around singing in earlier years.  Grandma got to be there too.  Both Grandma and Grandpa got good hugs today. 

Mary Ann slept a little later than usual.  She spent a couple of hours with one of the Volunteers from Church.  While I was away from the house during that time, reading, thinking and watching for birds at a nearby lake, it appeared that the time went well at home.  Mary Ann and her Volunteer Visitors seem to enjoy each others’ company.  Today, the Volunteer read to her from a novel they have been working on together.   She had with her the ingredients for a very tasty Asparagus Quiche.  We thoroughly enjoyed having a piece of that for lunch before leaving for the concert about an hour away. 

We enjoyed the concert, the music was well chosen and very well-performed.  The Children’s Choir of which our Granddaughter is a member sang first, and a choir of high school-aged girls sang some very interesting and unusual pieces.  All the music was very engaging and entertaining.

Afterward our Son and Daughter-in-Law treated her parents and us to dinner at a Cheesecake Factory restaurant.  It was an early Mother’s Day present for the two Grandmas. 

We went to out kids’ house for a while afterward and then headed home.  When we got home Mary Ann and I both had a little bit to eat since we the meal out was in the mid-afternoon.  Mary Ann struggled a bit with the food.  She started doing something she has done on occasion in the past.  She started what appeared to be cleaning her fork in her ice water.  She did it with the for she used for some pieces of meat.  Then she did it again with the spoon she used when eating some of her favorite jello (Seafoam Salad, if I remember the name correctly).   I asked her why she was doing that.  She said she was eating the ice.  It seemed that she was saying that to cover the fact that she really didn’t know why she was doing it. 

Later, she was washing her hands and spread some suds on her forearm.  I asked her if there was something there that needed washing.  She answered that there was not, but that her mind had told her to do it. 

She seemed to me to be a bit disconnected during the afternoon.  Since we returned from the last trip away from home, she has seemed to be confused at times, and she has slept during the day more often than has been so in the past.  She has struggled more with hallucinations. 

The confusion for me is that there is no way to know if what I am observing is really a decline, or just a cluster of glitches that will eventually pass.  We have experienced declines that have lasted, and we have experienced changes that came and then left after a time.   I may be reading too much into some minor miscues. 

Tomorrow, Mary Ann will have a small Basal Cell skin Cancer removed.  She has been through this before.  The word Cancer scares her.  The Dermatologist and I have both explained that this particular kind of Cancer is very treatable and not at all dangerous when removed at this stage.  She has still voiced deep concern. 

How she responds to this procedure will reveal more about whether she is in a lasting decline or just a temporary move. 

Caregivers are often confused by circumstances such as these.  We just don’t know what is happening.  The challenge for us is to deal with the feelings associated with a change.  If we work through the process of grieving the loss of one level of functionality and alertness, we are vulnerable to more confusion if there is improvement.  Then comes another round of grief if the decline comes again. 

Over the years I have observed an odd response especially in the close family members of someone who has come to death’s door on account of an acute Cancer.  If the person rallies and regains strength, there are sometimes feelings of resentment and frustration in those who have been a part of the journey.  It is as if they have gotten down the path toward acceptance only to be forced to backtrack to an earlier place. 

The result of traveling back and forth in the grieving and acceptance process is sometimes a sort of numbness that sets in.  People are afraid to let themselves feel much at all.  They have felt sad, only to be jerked out of that mode by their Loved One rallying. They have celebrated improvement and become hopeful for continued better days, only to have their hopes dashed by the next relapse.  I have heard people talk about feeling angry at the person who is sick when they have rallied again and again after being at death’s door. 

It is an odd response.  It is embarrassing.  People don’t want to admit to those feelings.  In my role as a safe person to talk with, a person who is bound by a vow never to share what is told in the context of confession, I have heard people admit to feeling angry when their Loved One has rallied. 

Caregivers have all those feelings as the roller coaster climbs high, only to plunge again. 

Tomorrow morning may bring change for the better.  It may not.  Tuesday morning may bring change for the better.  It may not.  The same goes for Wednesday, Thursday, Friday, Saturday and next Sunday — and every day after that. 

I am grateful to have a Source of strength that provides a sort of beacon as this journey moves in fits and starts, steps forward and steps back.   Each of us needs some place to turn for internal strength.  Whether it is rooted in a particular spirituality or in our basic humanity, strength is needed as Caregivers negotiate their confusion. 

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 3, 2009

Caregivers/Receivers Need Rituals, Habits and Routines

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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In an earlier post, I reflected on the value of some of the chores I do, cleaning the commode, making the beds, doing the little daily tasks.  They give me the feeling that I have a little bit of control in circumstances that are mostly out of my control.

I want to take the matter of routine farther in measuring its importance to the long term health of both Caregiver and Carereceiver.  I have not studied brain science enough to speak with authority on this, but there are some obvious elements of our complex brain activity that I would call “automatic pilot.”

When Mary Ann and I were dating, I would occasionally drive home from her house fairly late at night.  Maybe it was more than occasionally.  Maybe it was most times I saw her those summers together when I was not away at school.  Maybe it was more than fairly late — could have been very late.  I am the last of five children (there would have been seven, but two who would have been oldest died very early in their lives).  My parents were pretty mellow by the time I came along.  Yes, I was the baby in the family.  No I was not spoiled — maybe a little. My adolescent years did not include battles with my parents.  Open rebellion is not one of my gifts.

While my parents and I got along well, the late arrivals home from Mary Ann’s place set Dad off.  He was not pleased, to put it mildly.  Mary Ann and I just had a lot to talk about!  Since my parents had moved to a place in the country when Dad retired, it was a twenty mile trip home from Mary Ann’s folks’ place on a two lane blacktop.  There was an S curve that demanded slowing down to about 35 mph to negotiate safely.  On more than one occasion, I can remember coming to an awareness that I was past the S curve with no conscious memory of having slowed down and driven through it.  That is automatic pilot.

For me auto pilot is that part of my brain that functions without my need to consciously reason out what I am doing one step at a time.  That is where resides all the things I can do without thinking.

In my world, as small as it has come to be, there are rituals and habits and routines that not only order our day but help keep us safe and get things done that would seldom get done without the ritual.

There is a habit that I have developed to protect against Mary Ann trying to get out of the wheel chair or sit down in it while the brakes are off.  Doing so could easily result in injury as the chair rolled out from under her.  Whether it is the transfer chair or the wheel chair, any time I move it when it is empty, I leave the brakes on and just lift the back wheels, rolling it on the front wheels only.  The only time I take the brakes off is when she is seated securely in the chair.  The reason for such a ritual is that otherwise I would not remember each time to set the brakes before she gets in the chair.  The habit is a way to deal with my forgetfulness.

I line up the meds in a certain way (that Mary Ann developed) and follow a ritualized pattern to make sure that all the pills get in the right space.  I close the gate at the top of the stairs to the lower level whether Mary Ann is up and about or not, so that it won’t be open should she end up at the top of the stairs while dyskinetic or having an episode of fainting.

I have tried to reinforce habits in Mary Ann that help make my job easier and help keep her safe.  I have to admit I have been an abysmal failure at trying to build those routines and habits and rituals.  Her automatic pilot seems to have already reached capacity.  I seem unable to eliminate ones that are frustrating to me or seem unsafe, and I am equally incapable of adding new ones into her auto pilot that make my job easier or seem safer. Her automatic pilot developed long before the symptoms of Parkinson’s effected her mobility and dexterity and balance.  My hope has been to help create rituals and habits and routines that will help make life easier when the time comes that most of her actions will emerge from the auto pilot and few will be controlled by the Cerebral Cortex, the conscious, reasoning part of her brain.  There are some habits that seem to be developing but only a few.

I made a discovery tonight as I was thinking about this and reading an article I found on the International Brain Injury Association website on the importance of rituals.  I have been looking at this from the perspective of a Caregiver, seeking to manipulate rituals and habits and routines to serve my need for safety and ease in doing the care.

The article affirms the power of positive rituals to raise the quality of life in the brain injured.  I am applying this to those who are suffering from Dementia and losing themselves in the process.  Here is a quotation from the article titled “Overcoming Anomy: The impact of Positive Rituals on Quality of Life,” written by Dr. Thomas E. Pomeranz. “Each of these events (rituals) as well as the many hundreds of others which follow throughout the course of everyone’s day is uniquely ‘you.’  I actively choose my rituals as they evolve and develop over time — the evolution of my rituals is an ongoing process.  These rituals provide me with a sense of security, predictablility and continuity in my life.  How unsettling and tragic it would be if all my quirky mealtime rituals, like salting everything before tasting, using a teaspoon to eat my soup etc. were prohibited.”

Anomy is losing one’s identity, sense of purpose, becoming diminished in value.  The article observes that when the brain injured are trained in Occupational Therapy to change their habits and rituals, it fosters anomy, which them sometimes increases their acting out in frustration.  Pomeranz uses the term “nosocomial behaviors,” negative results from treatments intended for healing.

What that means to me is that by trying to change Mary Ann’s automatic pilot, I may very well be diminishing her, resulting in her resistant behavior.  She is just holding out for her identity.  My need for her to do things in a way that I recognize to be safer or that make my job easier may not help as much as they lessen her.  Maybe it isn’t safe for her to jump up and get her brush to run through her hair, but that is what she does, without thinking of the potential for falling.  Her automatic pilot from before the Parkinson’s guiding her actions.  My scolding her and insisting that I do it for her may make her safer and me less fearful, but something may very well be lost in the process.

Just as my rituals and routines help me order the corner of the world in which I live, Mary Ann’s rituals and routines and habits help define her as an individual.  My role as a Caregiver becomes more a task of accepting who she is and what she does even when it is neither safe nor convenient.  Rather than trying to change her, the precious little time and energy we have need to be spent looking for ways to be safe and function effectively in spite of those habits.  This part of the job of Caregiving will become harder as the Dementia increases.  A number of those who are much farther along in this journey have recently been reflecting on the need to come to acceptance as they deal with frustrating behaviors in their Loved Ones.  When finally acceptance comes, they are free to use all their energy finding solutions to each problem as it arises.

Both Caregivers and Care Receivers need rituals and habits and routines.  Caregivers need them to help maintain some control in their world, to keep themselves and their Loved Ones safe, and to make their life and the caregiving a little easier.  Care Recievers need rituals to keep from being diminished and losing their identity, so that they can sustain their identity, their individuality and their sense of security for as long as possible.

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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