April 19, 2010

Wasted and Worn Out.

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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One night and day like this are about all I am up to.  Last night the hallucinations fired up.  When I say that we got less than half a night’s sleep, I mean that if the night were to be sliced down the middle, lengthwise, there was sleep that totaled less than half the available time.  In other words, there was about twenty minutes out of every hour that may have included some sleep, at least for me.  As I write that, I suspect that I am exaggerating some.  I doubt there there was twenty minutes in any hour that was not spent trying to explain away hallucinations and convince her to lie down and go to sleep.

Once after I had pointed to her quilt on the wall and the family pictures on two other walls in the bedroom.  She stared me in the face and said in a very belligerent tone: “All right, now just take me home!”   At one point she was crying uncontrollably during a dream.  Almost immediately after I hit the publish button on last night’s post, she got up and then fell down in the corner of the bedroom. When I got there she was talking utter gibberish in a loud voice like the sounds she makes sometimes when she is starting to faint.  They are awful sounds.  They may have been some sort of wailing that was part of a dream that was going on when she fell.  I was afraid she had had a stroke, but when I got her up, she seemed to have awakened from whatever form of dream she was having.  She was still not at all lucid.

After having clear and healthy looking urine all day, up until the time she went to bed, she started showing some blood in her urine. I phoned Hospice, grateful to have someone to call.  The Hospice Nurse said she would bring over a kit to gather urine so that she could be tested for a urinary tract infection [UTI].  We agreed that it would be okay to wait until morning to bring it over.

After an entire night of getting up and down again and again, trying to get her to settle, she got up very early.  I had set the alarm early so that I could get a shower in before the nurse came.  Mary Ann was up before the alarm went off.  She was in hallucination streaming mode.  I simply cannot endure that for very long.  She hops up immediately after sitting down, needing to go somewhere, not always sure where.  She was in fainting mode, so each time she insisted on getting up and walking somewhere, she ended up on the floor.  I was with her each time, so I had to let her down to the floor, sometimes dead weight, so that she would not hurt herself.  Then I got the transfer chair beside her, pulled her up on to her feet and back into the chair.  As soon as I moved her back to her spot, she would pop up and the procedure would start again.  I could not begin to count how many times that happened.

I did manage to get her fed, no small task since she was hallucinating and paying attention or talking to whatever or whomever she was seeing.  I am utterly helpless to do anything about problems created by people or objects that have no corporeal presence.  They just don’t exist outside of Mary Ann’s plaque laden brain cells.  Whether or not they are real, they are so to Mary Ann.  They elicit the full range of feeling and frustration and fear that they would if they actually were real.

I had to sit two or three feet away from her every minute, or she would get up and move someplace where she could be hurt.  I could not so much as get in a fifteen minute shower.  The Hospice Nurse had to be late, since a client had died and she had been up with them all night.  I followed Mary Ann around, picking her up again and again for two or three hours, until just minutes before Nurse Emily arrived when Mary Ann simply crashed and had to go back to bed.

Nurse Emily dropped off the urine gathering kit for me to use later, but she was also willing to stay for fifteen minutes extra so that I could take a shower.  During that time Volunteer Edie came to stay with Mary Ann.  As always Edie brought lunch. This time it was a favorite of both Mary Ann and me, a Greek style meatball and veggie soup.  Mary Ann slept about three hours, beginning before Nurse Emily and Volunteer Edie arrived and ending just after Edie left.

We ate lunch, and afterward, Mary Ann started the same pattern as the one that had almost driven me crazy (short drive) before her nap.  A number of times when she popped up in the afternoon, she was irritated that I didn’t get her into the car to go to the Evening Service at Church.  The service is at 6pm (ten minutes away from our house) and she started popping up around 2:30pm.

The afternoon pop-ups included four or five of them beginning a trek to the bathroom, where the fainting and intestinal production ending up in the wrong place happened a number of times.

We did manage to get to the Evening Service, but I was wasted and worn out, and Mary Ann was not able to participate much in the service. There is enough structure to the service, that we could at least make it through the service.  Church and supper did not change the pattern.  We ate supper, Mary Ann sticking her spoon in the Pepsi and her napkin in the soup, often seeming to try to eat the napkin with the spoon.  Sleepless nights wreak havoc on her dementia.

I won’t deny that I had been hoping all afternoon and evening that she would go to sleep again.  She did not.  Now finally she is in bed.  She has been continuing to pop up and down, sometimes thinking it is morning.  I have had to talk her out of getting up and dressed.  I don’t know that I have another night like the last one in me.  I guess I don’t have a choice.

What I have written may make no sense, I am so wasted that my eyes keep shutting.  I need to get to bed. (Too tired to edit. It goes out errors and all.)  [I am adding this sentence to indicate that I have now edited this post, and Mary Ann and I did get some sleep last night.]

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

 

April 16, 2010

Baskin & Robbins Disappoints

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I guess I shouldn’t have asked.  It was my birthday treat coupon sent from Baskin & Robbins to me to print out from their web site – a free 2.5oz (Jr. Scoop) of ice cream.  I took it over and asked if they would bump it up to the 4oz scoop, since I was a good customer, loyal to B&R and had worked so hard to promote the newly opened store.

One of the two who run the store said that she could not do that.  I said I was sure she could just as a thank you for my marketing them so enthusiastically, up to even buying forty dollars worth of gift certificates right after they opened and giving them to others to get them to patronize the new store.  I didn’t remind her of it, but right after they opened, I also called the Staff person at the church responsible for Youth Ministry to relay that the other of the two who run the new B&R had indicated that at their other location they related to local churches. I told him that I had talked to the church and at that time he said he appreciated it.

She informed me that she always followed the rules, and bumping that up from 2.5 to 4 ounces would impact the inventory.  I said that I was not suggesting a change in policy, just an exception as a thanks for the support I had given.  She told me I could pay the difference (something around 50 cents if I heard her correctly) to get the larger scoop.  By the way, this conversation went on while Mary Ann was working on the two scoops I had gotten her.

I guess I was testing them to see just how custormer-friendly they were.  I was disappointed on that count.  She was absolutely within the rules and had every right to decline my request.  At the same time she certainly was free to choose to bump it up as a courtesy to a very good customer.  It seemed foolish to risk alienating a good customer to save their cost on 1.5 more ounces of ice cream.

When finally I checked out and paid, not only would she not allow the full scoop to be free, she wouldn’t do what I had understood her to say she would do, and just charge the difference in price between the two sizes of my single dip cone.

I feel pretty silly having gotten caught up in such a ridiculously tiny matter.  It is interesting to me how often very little things sometimes soak up way more  frustration than fits.  In walking through grief with people, it has happened that they have sometimes found themselves unable to cry until a sad program came on television or a pet was hurt or some little mechanical item at home stopped working, or the car wouldn’t start.  Sometimes the big things are too big to handle, so little things bear the brunt of feelings that have little or nothing to do with them. It is a way to release some of the energy that builds as huge challenges overwhelm.

While I have fun with our love of ice cream, Mary Ann’s weight loss is what triggered the move to Hospice Care.  We have struggled to find things that will help her stabilize.  The narrow range of what she will eat certainly does include ice cream.  I can get both of us out of the house with the promise of a stop for ice cream.  I suppose some of my fears about her well-being, completely irrationally, fuel my feelings.  The coping needed to handle 24/7 caregiving doesn’t leave a lot for use in dealing with the minor frustrations.

I am embarrassed to wonder out loud if some of my feelings had to do with the loss of influence when I retired completely from the ministry.  Maybe there was a little pain realizing that I don’t even have left enough influence to get a bump up of 1.5 ounces from a Junior Scoop to a regular scoop of ice cream at Baskin & Robbins. I certainly am profoundly imperfect.

On to what is really important.  Mary Ann slept well last night.  She was awake most of the day except for a comparatively short nap.  We had another bout with the combined fainting and intestinal activity.  It was not nearly as long and difficult as last Saturday evening’s battle. She went to bed at a normal time for her, and at the moment, she seems to be sleeping.

By the way, while I got pretty irritated at those who run the B&R, I am not going to  punish the two of us by not eating B&R ice cream any more.  I am annoyed but not crazy!

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 13, 2010

Privileged or Overwhelmed?

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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Yes!!!  There has been an especially thought provoking thread of conversation in the last couple of days in our online group of Caregiving Spouses of those who have a form of Lewy Body Dementia.  What is shared there is just for the membership.  I will only comment in a general way what issues have been raised.

The group is a place where members can vent freely without fear of judgment.  We can whine, scream, cry; we can reveal what is going through our minds even if it is not very nice; we can complain; we can talk candidly about things that would gross others out; we can be matter of fact about matters that would frighten those who have not been in our shoes.

We all have a common enemy — the disease that is stealing from us our Loved Ones and at the same time the life we might have had were the disease to have passed by without stopping at our place.  The recent thread has ruffled feathers as members have disagreed on how to talk about what we do, the lives we have now that Lewy is part of the family.

Some talk about the unfairness of it and the pain and the waste of the life they wish they had and the ultimate defeat that comes at the hands of the disease.  Some write when they are depressed by their powerlessness, when they are grieving the loss of the person they love while that person’s body still needs care, while that person’s physical presence may be threatening, or simply vacant of recognition. Some feel like victims of things beyond their control.  Some cannot tolerate the thought of seeing the situation we are in as a privilege.

Some talk about the privilege of caring for their Loved Ones.  Some see the care being given as a choice made by the Caregiver.  They could have run out on their Loved Ones, but they have chosen to stay.  Some find satisfaction in what they are doing.  Some see their caregiving as their current job, providing them with meaning and purpose.  Some refuse to allow themselves to be victims.  Some make the best of the situation seeing positives that come out of it.

There is a continuum of feelings and perceptions that has the above attitudes at opposing ends.  For lots of complex reasons that have to do with people’s family of origin and life’s experience and world view, most of us gravitate to a certain place on that continuum as our home base.  With that said, at one time or another any of us can be at either end or anywhere between.

What is helpful is to have a place to go where there is permission to admit to being anywhere along that continuum — no apology needed, no justification, just understanding and acceptance.

I will admit that my home base lies in the place where there is acceptance of our lot being no better or worse than any other lot, just different.  I don’t feel victimized.  It feels very right to be enjoying a healthy relationship, fulfilling promises made.  I feel very privileged to be able to actually make a difference in the quality of life of someone else with actions, not just words and occasional gestures.  While I would not choose this disease for Mary Ann, I am grateful for the growth in our relationship, the strength of character it has brought to the surface in our Children and Grandchildren, the wonderful friendships of so many good people surrounding us with help and support, what it has taught me about real love, not the stuff in the movies, the depth of faith that has grown from knowledge to experience of the Presence of God and God’s unconditional love and acceptance moment by moment every day.  I wouldn’t trade my life for anyone else’s.

At the same time, I can scream in frustration and feel overwhelmed at any point on any day of the week.  When my Lewy Body Dementia Caregiving brothers and sisters vent I am with them.  When they suffer, I am with them.  When they celebrate victories, even little ones, I celebrate with them.  They reveal courage as courage really looks when lived in the throes of real life, not as portrayed in the movies.  It is courage that can be messy and ugly and smelly and scary and enduring and bold and beautiful.

Privileged or overwhelmed?  Yup.

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

 

April 10, 2010

Bucket List?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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This morning she said, “Let’s go some place and have some fun.”  Further interaction confirmed that she meant some sort of major trip this summer.  As we talked, she said, probably nowhere high [in elevation].  We had begun arranging through friends the use of a condo in the mountains of Colorado a couple of years ago.  After consulting with the Cardiologist, it seemed unwise to tackle a high elevation, putting stress on Mary Ann’s heart.

In the movies, a bucket list makes all the sense in the world.  Who could argue with doing anything and everything you have wanted to do before dying when death seems to be coming in the near term?  In the movies, whatever stands in the way can just be written out of the story line.

The dilemma in deciding what to do in response to the request for a major trip for fun, is that there are conflicting realities.  Each has validity.  One reality is Mary Ann’s view that is no longer reasoned through the executive function of her brain.  To her, the fainting, bathroom issues, problems with eating, falling, sleep problems, access to appropriate medical care, all are of little or no consequence.  She lives in a world in which she is constantly protected by those of us around her, taking care of whatever problems arise.  In that reality, there are no barriers to traveling wherever and whenever, just having fun doing all sorts of things.

There is validity in that view.  The various assessments of her physical/mental situation suggest that there may not be many years left to do all sorts of entertaining and enjoyable items on our wish list.  Assuming that is so, we need to get out and do anything and everything we can, as soon as possible.

The other reality is that we are on a roller coaster in which there is no telling if Mary Ann will be alert or completely out of it, whether she will be able to stay awake or will crash suddenly, whether she will be able to stand and transfer to the toilet stool or will crumple in a dead faint.  We don’t know if she will be able to eat or sleep or discern reality from hallucination/delusion/dream.  In the other reality, I am the one who has to figure out how to deal with whatever comes when it comes.  Not having the resources that are easily accessible here at home when problems come is a real issue.  This is not a movie.

The question is, how do we balance what is actually so in our little world with what we would like to be so.  My problem is determining how many of the barriers that I see are more my own concerns over what might happen rather than real barriers.  Now that we have made decisions associated with the transition to Hospice Care, the fear of not making it to a hospital in time may be unsettling, but it is no longer the primary issue.  We have already faced that demon and stolen its power.

I don’t want to stand in the way of Mary Ann having as good a quality of days as possible in these next months or years.  I also am not infinitely good and capable and strong and filled with limitless endurance for whatever may come.

In a recent thread of posts by members of the online group of Caregiving Spouses of those with forms of Lewy Body Dementia, there were some who talked about the struggle to do enough to provide adequate stimulation in their Loved Ones’ lives.  Some in that group have seen how others can draw the best out of their Loved Ones as they respond at a level referred to as “showtime.”  We have just come off three weeks of visits by friends and family.  Mary Ann has been at her best much of that time.  She has been engaged in conversation, she has laughed, she has connected and initiated interactions.  As Caregivers we want to provide that sort of quality all the time.

We can’t do it.  We can’t provide enough to compensate for their limitations.  Last night Mary Ann did not sleep well.  Today she made it through lunch, then crashed, fainting so much that she just had to lie down.  That was at about 12:30pm.  I tried to get her up two or three times, but it was 5:30pm or later before she got up.  We got some Dairy Queen, she came home and crashed again.  No matter how romantic it sounds to check off items on a bucket list, there are some parts of our reality that we can’t change.

For now, my intention is to think as creatively as possible about options for places that might be fun for Mary Ann.  I am willing to stretch beyond my comfort zone what we try to do.  She has mentioned the Quilt Museum in Paducah, Kentucky as a possible destination in the past.

…I have just been “scared straight!”  My comments above about two realities have just ceased to be a balanced weighing of conflicting views.  I have spent the last hour (not sure, lost track of time) in an intense battle with active intestines, in a fainting, jerking stiff body, fighting against every move to try to keep what was coming out off clothes and into its designated receptacle.

Mary Ann is only 113.5 at last weigh-in, but it took every ounce of strength I have to try to manipulate her into position, hold her up while trying to clean her up, while she would stiffen in a sort of mild seizure, or go completely limp becoming dead weight, all happening while trying to take clothes off or put them on or wipe off her body where it had spread or the toilet seat so that it didn’t spread again when she fell back down on it in a faint.

This was about as tough a time as we have had with that activity.  I describe out loud the difficulty I am having and my frustration with it as it is happening.  That is part of my getting out what would be tougher to handle if I tried to keep it in.  A couple of times when she happened to be conscious she told me to calm down. My most frustrating moments are the times her body is fighting against what I am trying to do to get her seated so it will go where it should go.  Once, she even said I should put her some place, to which I immediately responded, “I am not putting you anywhere!”

I have now rinsed the matter off Mary Ann’s pajama tops and bottoms in fresh toilet water, put them in and started the washer.  I have washed my hands fifteen times.  Cleaned the stuff from under her fingernails, gotten her in clean clothes and into bed.  There was one aftershock that included the fainting and all the rest except (gratefully) for the “stuff.”  She is again in bed.  I have taken a couple of Ibuprofen to take the edge off the back and muscle pain from the physical exertion.

You have just had a peak into something that is routine in the lives of many Caregivers.  Others in the online group have to do what I just did but with someone who outweighs them by a hundred pounds.  I have no idea how they do it.

Mary Ann will be fine; I will be fine.  It is just another day on our roller coaster ride.  This encounter with one of our realities has certainly suggested that traveling a long way may not be a very good idea.  It is hard to imagine doing what I just did, but in a motel bathroom.  At the moment, our bucket has no room for a list, it is full of poop.  Tomorrow is another day!

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

 

April 10, 2010

Crazy Robin Reveals Painful Truth!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , |
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He looks at his reflection in a window panel at deck level and attacks, again and again and again.  It is a wonder he hasn’t knocked himself out.  Coincidentally, just last week the Kansas Birders discussed this problem in a thread titled “Crazy Cardinal.”  An explanation on the Audubon site said that Cardinals and Robins are almost the always the culprits when this happens.  There is so much testosterone flowing at this time of the year that they will even fight with themselves for territorial dominance.

When I watched this strange behavior going on, I couldn’t help but remember the quotation by Pogo, which ended up the title of a book,  Pogo: We Have Met the Enemy and He Is Us.

If I have read this correctly, there is a paragraph quoted in the forward to
The Pogo Papers, Copyright 1952-3, that comes from “Quimby’s Law (passed by the Town of Quimby after the Trouble with Harold Porch in 1897) on which the quote was based.  Whether or not I am correct, the paragraph includes an expansion of those words.

“There is no need to sally forth, for it remains true that those things which make us human are, curiously enough, always close at hand. Resolve then, that on this very ground, with small flags waving and tinny blast on tiny trumpets, we shall meet the enemy, and not only may he be ours, he may be us.”

Watching that Robin expending so much energy fighting against his own reflection struck a chord with me about some of the battles I fight, battles that I suspect other Caregivers fight.  I have little doubt that this painful truth lies in the experience of most of us, Caregivers or otherwise.

It seems to me that sometimes I expend more energy and experience more frustration dealing with my reactions to problems than the problems themselves.  The problems themselves are just facts of our circumstances.  I have no control over them.  They just are what they are.  They have no sentience.  They aren’t seeking to make me miserable.  They are just the harsh realities of living with any other human being, let alone one with Parkinson’s Disease and Parkinson’s Disease Dementia.  Some of those realities are just stuff that comes with daily living.

We have been impacted by Parkinson’s for over 23 years now.  That is just a fact of our lives.  Everyone has something to deal with, most often lots more than one something.  It is a waste of time to try to determine whose trouble is worse.  The issue is not who has more or who has less to deal with, the issue is, what will I do in the face of my problems.  I have a finite amount of time and stamina.  I can’t afford to waste a whole lot of it battling my own reflection.

Let me try to make sense of that.  When something happens, Mary Ann falls, I can pull the transfer chair over, pull her up, see if she hurt herself when she fell and then get on with whatever is next.  That takes some time and physical effort but nothing of major consequence.

Other alternatives for responding include the response just described plus wondering what possessed her to get up in the first place when she knows she is vulnerable to falling; is she just trying to make it difficult for me; why is she so stubborn, how many times do I have to do this; what if she hurts herself badly, that will mean hospital or rehab or nursing home; she will hate it there and so will I, will I have to spend my days at the nursing home doing all the things the staff doesn’t have time to do, should I have changed the dosage on a medication to help reduce the falls, is there something that I should have done to anticipate the fall and stop it from happening, if she would just stay in her chair, I could get something else done, Volunteers would be more willing to stay– the more she falls the less likely they are to keep coming to be with her.

I don’t go through all that every time she falls, but when anything happens, there can be all sorts of reactions that use up precious energy that would be better used just doing what needs to be done.  Too much time gets wasted fighting against imagined enemies that are created in my own mind.

Mary Ann slept well last night, and we both ended up sleeping late this morning — much needed.  Hospice Aide Sonya came and helped Mary Ann with the morning prep tasks.  There was some fainting later that resulted in a nap, but it was a fairly short nap.  We ate out at McFarland’s.  She allowed me to help her after a while.  We had some of Maureen’s spaghetti and Kroger’s brussel sprouts from the freezer.  Next came the promised trip to Baskin & Robbins.

Mary Ann is in bed now, but I am not sure yet how well she is sleeping.  There seems to be some restless movement.  Hopefully, we will both rest well enough to enjoy the beautiful day predicted for tomorrow.

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

 

April 6, 2010

Sort and Purge

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , |
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Then comes: Assign a home, Containerize, and Equalize.  You now have the secret formula for making SPACE in which to live without succumbing to the clutter.  Easier said than done!!!

As Mary Ann and I looked at the symbols of our life as individuals and together, the sorting and purging has had implications beyond the things themselves.  While Mary Ann has been better at letting go of things than have I, I have inferred from a couple of reactions that she struggles with so much of her life being out of her control.  She has to get me to do for her much of which she has always done for herself.  She has an independent streak a mile wide.  It has to frustrate her to no end to have to depend on someone else, someone who gets grumpy and complains far too often.

To have things thrust in front of her with the question, “keep or give away,” can’t have been very easy, especially with an impaired Executive Function (reasoning things out rationally) due to the Parkinson’s Disease Dementia.  We wore her out.  She went to bed early.  We made a point of keeping anything about which there was any hesitance on Mary Ann’s part. She retained the veto power.

As the memories of past times are triggered, there are questions that lurk behind them: Is that all there is?  Is it enough?  Are there more memories to be made?  Does letting go of the symbol diminish or dishonor the past experience symbolized by it?  What on earth is this and when and where did we get it?

Actually, we have only done the relatively easy items.  For me, there will be boxes of ministry related items and memorabilia that have to be dealt with.  What does a person do with forty years of sermons?  Why do I suspect there are a number of smart aleck comments wandering around the minds of readers?

I have mixed feelings about the sorting, purging and organizing that is going on.  The benefit seems to me to be gaining space in which to live, both physically and mentally.  The clutter occupies a lot of space in my world.  On the other side of it, there is a bit of fear that having that job done will remove a goal that helps define my purpose.  I need to clean the basement.  That is a job for retirement.  Once it is done, what will fill its spot in my sense of purpose, my intentions?

Anyway, the task goes on.  While we were in the garage working on that task, a couple of medium-sized, maybe Labrador mix, stray dogs wandered by to visit.  They had no collars.  They were friendly, and appeared to be well-fed and in good health.  They were great with the kids.  We called animal control, but they dogs had wandered away by the time the truck arrived.  After he left, they returned and spent an hour or hour and a half, hanging around, playing with a tennis ball the kids were throwing, lying on the deck as the family sat out there.  I phoned animal control again, but this time no one showed up.  Finally, they wandered off.  I hope they are caught and find a good home.

Well, again, I am too tired to write any more tonight.  It is time to get some sleep.  Hopefully both Mary Ann and I will sleep well.

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 28, 2010

Exhausting Day of Fainting

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , , |
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It has been a very long time since there was so much fainting in one day.   Anyone who is not okay with explicit talk about BM’s should probably pass on this post.  I was grateful for a three or four hour nap in the middle of the day and more grateful when the ordeal was over this evening and bedtime arrived.

I am a seasoned veteran in what I call waste management.  It is just part of helping someone who no longer can handle those duties on her own.  I am used to the fainting spells.  They no longer scare me.  It is when the two intertwine for all the hours she is awake that it calls into question my physical capacity to do this task.

I am not grossed out by it.  I am not pushed to a high level of frustration by it.  I am just tired and sore, grateful for a break from it now that she is in bed.  Yesterday, I mentioned that Mary Ann’s blood pressure was a very low normal when the Hospice Nurse took it.  I observed that resting blood pressure that low did not bode well for what might be so when she stands up for a while.

I meant to take her BP this morning, but did not remember to do so.  As a result, I am not sure yet about whether or not to start the Midodrine, which raises her BP and reduces the fainting but keeps her BP dangerously high.

Mary Ann got up fairly late today.  It was apparent from the morning trip to the bathroom that the fainting was a problem.  We managed to get her breakfast done.  Then the bathroom trips began.  She felt that she needed to go, but there was little production.  Each time she got on the stool, she fainted.  Each time she stood up from it she fainted.  My role, as I have mentioned before, is to hold her upper body back so that she does not fall forward off the stool.

She was fainting so much that she couldn’t even sit up in her chair when I got her back out into the living room.  I just took her into the bedroom and got her into bed.  She slept for three or four hours.

After she got up, I fed her lunch and the bathroom trips began in earnest.  There was more production during the afternoon.  Once down there would be a some activity.  Then I would pull her up, hold her up and do clean up, almost always including (sorry) getting out some that would not come on its own.  Then as that was going on, she would faint again.  Trying to get her into the sitting position when she is only partially conscious and holding herself stiff, takes all the strength I can muster.  The torso has some pretty powerful muscles.

Each time we went in, there would two or three repeats of that same pattern with occasionally a few minutes of just sitting there holding herself up. During those times, I stayed close to her so that I could get there immediately when she popped up.

Most of the next couple of hours contained those trips, each about the same in terms of my role.  When Mary Ann was not in the bathroom, she was in pop up mode.  She has absolutely no awareness of the risks of getting up no matter how often she faints or how much I remind her not to get up without my helping.  At one point, I had to click the seat belt on her transfer chair to slow her popping up so that I could finish folding the clothes from the dryer.

What I have described above is a very normal activity for Caregivers of those with Lewy Body Dementia.  I can hardly complain.  Others have a far more difficult time than do I.  I write in such detail first of all for selfish reasons.  It helps me to put into words and sort of “get off my chest” just how difficult a day can be.  I hope that the detail also provides a point of contact for those who are experiencing the very same thing but have no one to talk with about it.

I also hope that those of you who have friends or family or acquaintances who are caring for someone, will realize what they are going through and cut them a little slack.  If they are whining, they are doing so for good reason.  You don’t have to try to fix their situation, just listen patiently without immediately changing the subject to something that is going on in your life or tell them about all the other people who have it worse than they do.

Tonight, I am wondering if there is a direct correlation between the low blood pressure fainting issue and Mary Ann’s ability to keep on track mentally.  Shortly before going to bed, she stood up and called me over.  I asked what she was doing.  She seemed distressed and said she was leaning against a wall.  Her eyes were open, not slammed shut as happens sometimes.  She was in the middle of the living room, in front of the television.  When I said there was no wall, she responded, “Did they take it down?” (Probably a memory of the removal of walls in during the sun room construction.)

Moments later in the bedroom, she asked what day it was.  I answered, “Saturday.”  Then she asked me if I was preaching tomorrow.  I asked her when the last time I preached was.  She said, “Last Sunday.”  I asked her if she remembered that I had retired almost two years ago and had not preached since.  She just looked puzzled.

While she does get confused and have delusions and hallucinations and dreams that she cannot tell from reality, those interactions tonight, seemed a little extra odd.  That raised in my mind the question of the impact of so many times today that her blood pressure was too low to keep an adequate supply of blood flowing to her brain.  I am wondering what sort of cumulative effect that has.  If that is the case, it complicates the current decision not to give Mary Ann the Midodrine that raises her BP to harmful level.  There is nothing easy about dealing with this combination of diseases and debilities.

f 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 27, 2010

Reduplicative Paramnesia

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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Last night Mary Ann told me that they were trying to trick her.  They were trying to convince her that she was not in her bedroom.  That is a Delusional Misidentification Syndrome called Reduplicative Paramnesia.  It is the belief that a familiar object is actually a substitute for the real one.

Those whom Mary Ann calls the Thursday people were back.  I think it was they who were trying to convince her it was not her bedroom even though it looked just like it.  At least one other time during the night, she asked if the people had settled down yet. As I have mentioned before, I do not want to reinforce the delusions and hallucinations, but I don’t want to dismiss them since they are real to her.  I try to explain that they are not real in a way that I can see them or do anything about them.  Gratefully, she is not terrified by them.  Hospice Nurse Emily confirmed that today when she asked Mary Ann about the hallucinations.

The problems related to what information her visual cortex sends to her awareness are one of the signature symptoms of Lewy Body Dementia and the Dementia that comes to some Parkinson’s Patients.  It is the problem with delusions and hallucinations that often force the issue of using residential care.  As challenging as they can be, with the help of Hospice, I am determined to avoid any residential care other than perhaps a respite day some time. So far the hallucinations are not so strong and so constant as to be impossible to handle.

Today, again, there were multiple events of syncope (fainting) associated with trips to the bathroom.  I suspect that I held her up on the stool upwards of a half hour adding together ten or fifteen minute segments.  When Hospice Nurse Emily took Mary Ann’s blood pressure this afternoon it was 118/68.  That would be good for a twenty year old.  When it starts out that low, it can, of course, go much lower when she stands up.  I have been trying to manage the fainting without resorting to the Midodrine that raises it.  The high BP is so harmful to her heart and kidneys especially.  If it remains that low, I may need to reconsider restarting the Midodrine.  The Cardiologist has given me the freedom to decide whether to give her the Midodrine based on our quality of life.  The preference is to avoid using it.  Those sorts of decisions place a lot of responsibility on my shoulders.  Yes, I am the one with the best vantage point for making the decision, but I feel the weight of that responsibility.

Gratefully the fainting spells were over just before Hospice Aide Sonya arrived at 11am to wash her hair, give her a shower and get her dressed.  Sonya said that Mary Ann did fine. After the shower, we headed out to do errands and to pick up lunch for Mary Ann.  It was a favorite of hers, steak soup and lemon meringue pie from the Copper Oven.

Again after Nurse Emily left in the mid-afternoon, we headed out for errands.  During that run, I picked up some flowers for Mary Ann.  Daughter-in-Law Becky had won a commitment from me to get Mary Ann flowers regularly in trade for adding our cell phone to their account. Do you see why we think so much of our children and the ones with whom they have chosen to spend their lives?

Of course that trip had to include a stop at Baskin & Robbin’s.  Those of you who have been paying attention will probably want to remind me that late afternoon ice cream treats ruin supper and make for tough nights including lots of snacks.  I know!  But the ice cream tastes so good.  She went to bed not too long after 6pm, and yes she has already gotten up to eat a sandwich and some applesauce.  That was around 9pm.  I hope that is enough to get her through the night.

Even with all the ice cream, I reported to Nurse Emily that Mary Ann weighed in at 113 pounds yesterday.  That is down from the last time, 114.5, but up from the time before that, 112.5.  That is about 10% less than she weighed not too many months ago.  At least she seems to be holding her own at the moment.

There is one way in which her weight is an advantage.  Most of those who post in the online Caregiver Spouses of those with Lewy Body Dementia are women caring for their husbands.  A number of them in the last couple of days have talked about the predicament of having their almost 200 pound husbands fall, leaving them unable to get their husbands back up.  Most of them have had to call 911 to get their husbands back up.

I am grateful that Mary Ann is light enough for me to handle most of the time.  Reading those posts, I appreciate how easy I have it by comparison.  I feel a little wimpy when I have trouble getting her off the floor.  It all has to do with where she is located when it happens, whether I can get her in a position that allows me to pull her up and whether or not she is alert enough to help in the process.  When she is partially asleep or feeling very weak, picking her up from the floor with no assistance from her is almost impossible for me to do without risking damage to myself, thereby rendering our system unworkable.  We do have a Hoyer Lift to use if she is located in a position that allows me to get the sling under her.

It is getting late, and since i have had to get up fairly early each day to prepare for the workers on the remodel project, I am anxious to sleep in a little while tomorrow morning.  That will be up to Mary Ann.

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 16, 2010

Missing Skill Sets

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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She liked it!  She actually liked it.  Those of you who have been reading this blog for a while know that I struggle to provide tasty meals for Mary Ann.  I will eat almost anything (except Okra, Oklahoma friends may remember).  Mary Ann, however has a discriminating palate.  That is a classy way of saying she is an annoyingly picky eater! She has been a phenomenal cook when she still used the kitchen.

I can hardly claim the high road here.  I am a hopelessly unskilled and lazy cook.  Give me a four gallon pot and a refrigerator of odds and ends, a few cans of beans and tomatoes and I can make a pot of soup that is nourishing and filling, if not tasty.  I am pretty much the only person who will eat the soup that I make.

People keep telling me that all I need to do is follow a recipe.  They forget to mention that there need to be ingredients purchased, seasonings on hand and enough experience to understand what the heck the recipes mean.  They tend to leave out instructions for things “everybody” knows how to do.  Then there is the issue of getting things for the meal all done at the same time, so there aren’t cold mashed potatoes with a hot roast.

Anyway, she liked it.  She had wanted a pork roast.  She usually doesn’t suggest meals, especially now that words are very few.  She picked out the roast. at the store.  Of course the choices did nto include a pork roast like the ones we used to have, the ones with the bone, lots of fat, and the tenderloin still attached.

I browned the roast in a pan with some olive oil.  Then put it in a large rectangular glass baking dish.  I surrounded it with large hunks of cut onions, red potatoes cut in half, and a half cabbage cut into quarters.  I put salt on all of it since so many veggies would need it.  I sprinkled a little garlic powder on all of it.  I covered the roast with dried thyme.  I deglazed the browning pan with some beef broth.  (Are you impressed yet – “deglazed” — am I cool or what?)  Then I poured that over everyihing, added a little more olive oil on top of the veggies and cooked the heck out of in the oven for a couple of hours.

It was good!!!  She liked it. I liked it.

We also had a windfall.  Don and Edie brought over a meal from the Baptism dinner.  Today, Shari who stayed with Mary Ann this evening brought over tonight’s supper.

Gratefully, our Daughter, Lisa, has made a number of items for the freezer that I only have to thaw and heat.  What a blessing.  She did that while she was here with Mary Ann when I headed to Oklahoma for the three day retreat.

There are lots of people who find themselves in the position of lacking certain skill sets to fulfill all the needs that emerge because of the circumstances that they are in.  When a household has a couple of adults and some children in it, the tasks get either divided or shared, depending on the skills each adult has.  Even in households with two or more adults, there still may not be some skills needed to sustain the household.  In that case, the people in the household earn money to pay someone who does have the skill set that is missing.  Plumbers and electricians come to mind as those who might be paid (now or later, if an unskilled household member tries to fix whatever it is).

People whose life circumstances change may find themselves lacking needed skill sets.  It happens when there has been a divorce.  It happens when a spouse dies.  It happens when  a key member of the household becoms disabled.  It comes with the territory for anyone who happens to be the only one living in the household.

There is inside maintenance, outside maintenance, accounting and money management, automobile maintenance (what and when and whom do you trust).  I am sure you could add lots to that list.  For Caregivers, the task is often complicated by the sheer wieght of dealing with all the personal needs of someone else as well as his/her own.

I have to admt that in my case, many of the missing skill sets are not ones that couldn’t be gained with a little effort.  Therein lies the rub.  Effort is in short supply.  Yes, a lot of it is just laziness.  I have not always been adventurous in learning how to do new things.  I am a procrastinator, and as a reault, I often just don’t get the learning process started on a new skill in time to do what needs to be done.

The skills that are necessary to full time caregiving include food preparation (unfortunately — especially for Mary Ann), managing a household, managing finances, good decison-making (lots to be made on your own), medical diagnosis, communicating effectively with medical professionals (both listening and talking), basic CNA skills in assisting in toileting, showering, dressing, feeding, washing hair, basic household duties such as washing clothes, making beds, cleaing the bedside commode, cleaning up after meals.  Those of you who are Caregivers can, I am sure, add at least as many more tasks that come with the territory.

So, as do each of us who have total responsibility for keeping a household functioning, I do what I can do, find others to do the things that I am currently not equipped to do well, and ignore the rest.  Just don’t look to carefully if you come to visit.

Actually, I have decided only to have very low maintenance pets in the house to keep us company.  At the moment, we have only Dust Bunnies as pets.

Today went reasonably well for Mary Ann, but there was a lot of sleeping, in spite of very loud sawing and banging on the outside walls soon to be removed.  I hope she sleeps tonight.

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 15, 2010

Dr. House Diagnosis is an Odd Coincidence

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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No, I have not gone over the edge, relying on Dr. House for diagnostic input.  First of all, the character, Dr. House, is extremely annoying, especially to those of us who have encountered arrogant doctors.  Gratefully, other than one Hospitalist, we have been spared that problem in recent years.

Mary Ann loves watching the series, “House.”  We have seen the episodes so many times it is hard to stay in the room when they are on.  There was one yesterday that was far too close to home.  It was one that I don’t remember seeing before.  A character named Amber has been in a bus accident and ultimately dies at the end of the program.  She has died of Amantadine poisoning.

Amantadine is the drug we discontinued a couple of weeks ago and restarted about a week ago.  One reason I was reluctant to restart the Amantidine was a series of warnings to doctors about it in the info sheet that comes with it.  Amantidine is retained in the plasma (I believe) especially if kidney function is compromised.  Mary Ann’s kidney function is significantly reduced due to all the years of high blood pressure.  One warning to the doctor’s was that in elderly patients it is metabolized differently and needs to be reduced so as not to build up.  Mary Ann qualifies since her Body Mass Index has declined so much.

In the program, Amber died of Amantidine poisoning because her kidneys had been damaged in the accident.  Her body could not flush it out.  She was taking it for the flu.  The brand name of Amantidine is Symmetrel, a drug often prescribed to people with the flu to reduce its impact.

No, I am not concerned.  She has been taking it for years.  Yes, when I fax the Neurologist to get in Mary Ann’s chart that she has resumed the Amantidine, I will ask about the warnings given to doctors about it.  No, I will not start the fax with the words, “Dr. House says….”  I will in that fax explain that Mary Ann’s hands swelled and began to display contracturing.  I will explain that she ceased to be able to help with transfers, pretty much losing the abililty to stand.  I will mention that the daytime sleeping doubled in the number of days in a row that she slept.  All that began 36-48 hours after stopping the Amantidine.  Now that she has been on Amantidine for a week, the problems have diminished or returned to the level that preceded stopping the med.

The bad news is that so far the Amantidine does not seem to be doing again the very thing Mary Ann was taking it to do.  Those wavy movements that are apparent when Michael J. Fox is on television are called dyskinesias or dyskinetic movements.  They are caused by years of taking the basic med (brand name, Sinamet) that gives Parkinson’s patients the ability to move (and if a person has them, it reduces the tremors – fast shaking movements usually of a hand).

The Amantidine reduces the intensity of the dyskinesias.  They can be terrible.  There have been times in years past, when Mary Ann almost could not stay in a chair, arms and legs and body were twisting and turning so much.  More than once she has almost flown off the gurney in an ambulance or the Emergency Room.  She takes much less Sinamet now, and with the Amantidine those movements have been subdued.

Guess what?  Resuming the Amantadine has not brought back control of the dyskinesias.  Gratefully, she is not flying out of bed, but on occasion in the last week or so, I have had to click the seat belt on her transfer chair or wheel chair to keep her from slipping out.  It is an interesting challenge to try to help her put her jeans on when her legs are crossed and twisted, moving constantly.  Her muscles are very strong from years of those movements.  I have observed that trying to help her get dressed when the dyskinetic movements are going at full intensity is like trying to wrestle a Python.  No I have never wrestled a Python.

Dyskinesias are completely involuntary.  She cannot stop them.  Stess makes them worse, but just trying to relax will not make them go away.  I am not concerned about this development.  It is nothing new to us.  We just got spoiled when they were under better control.  Now that I realize what other problems the Amantidine seems to be helping control, I will not stop it just because it isn’t helping with the dyskinesias.

Two mornings ago Mary Ann fainted a number of times.  I tried to take her blood pressure, but when she is dyskinetic, it is just about impossible to take her BP.  The movements make noise in the stethoscope that confuses listening for the heart beat.  She fainted multiple times yesterday also.  I heard nothing through the stethoscope, no heartbeat at all, but since she was alive and well, there was, of course no panic.  She was fainting so much I had to lay her down in bed.  She napped for about three and a half hours.  When I did get her blood pressure after napping, it was 165 over 100.  It had been that high the day before when finally I could get it.

Following two mornings of so much fainting, I had decided to resume the Midodrine to raise her BP.  After getting the 165/100 later in both days, it seemed again to make no sense to be raising it higher.

Maybe if we need for me to get a part time job, I could help out at a Pharmacy.  That degree should be coming in the mail right after the MD, with specialties in Neurology and Cardiology, arrives.

On another note, instead of my usual visit to the lake this morning while Volunteer Elaine was with Mary Ann, I headed to church for the Baptism of Oliver, Grandchild to Don and Edie, good friends who have brought us food so often — Edie leads our Spiritual Formation Group.  Since the timing of the Sunday morning Volunteers allows them to attend the 8am Service, they arrive well after the 9:30am service has begin.  As a result I came in quietly in the middle of the service.

For the first time, the prayers included the public announcement that Mary Ann is now being served by Hospice.  At that moment, the fact that I was in church alone struck me.  I didn’t like it!  Afterward, I ended up at Don and Edie’s for a celebration with food.  I would normally have gone to such an event with Mary Ann.  I didn’t like being alone!

I have heard from those who have lost a spouse just how difficult it is to go places alone, places that the two had always gone to together.  Today, that awareness took on a new dimension.  On the positive side of that new level of awareness, I celebrate even more being together with Mary Ann all day long every day.  My gratitude for having retired when I did rather than waiting another year is even deeper.  Whether she is asleep or awake, lucid or not, I am glad she is here.

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

 

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