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Words To Ease Guilt

I haven’t written in a while.  Caregiving still takes up a good bit of my time- actually my world still evolves around it.  But I think I am just so tired of it all, that I don’t have the energy to write about it.  It just gets old.

I have been thinking about guilt. I always feel guilty, it is one of my greatest talents.  ( “Ha”, she said, sarcastically.)  But lately, I have been trying hard to make some sense of it, to figure out a way to help other caregivers manage it.  Recently, I read two  articles on caregving.  In one, the author called caregiving  ” a crucible”.  Now that certainly evokes positive images – NOT.  I looked up the definition and one of them is ” a place or occasion of severe test or trial.” And of course, it was a play written by Arthur Miller ( once married to Marilyn Monroe for all you trivia fans ) about the Salem Witch trials.   Then today, on Facebook, I read an article about the top ten emotions to be mindful of if you are a caregiver. Guess what was number one? Yep, that pesky guilt.

It seems to me,  the biggest reason  caregiving can be called a crucible is the emotional burden. Yes, caregiving can be physically exhausting, and financially burdensome, but the emotional burden is the one that is most difficult to manage. One can find ways to get some physical rest.  You can sell something to make money, get a reverse mortgage, etc. to deal with some of the financial burden. ( Not implying it is easy, just saying there are ways…)  But it is difficult to come up with a plan to ease our emotions, especially guilt.  Guilt is the one that seems to really hang on with a vengence.  I hear it from members of support groups, and other caregivers I encounter as I speak around the country. It seems to be a universal commonality.

As a reader and a writer, I know that words have power.  That’s why we can become so upset about what we read on Facebook. Those fools who  post those inane political statements can really get us riled!   But seriously, we know how words can hurt.  And occasionally they help.  When someone tells us ” Good job!” it sticks with us for a while and buoys our mood and spirit. And when the person with dementia for whom we care says ” Who are you?” or ” I hate you!” we know the power, the pain in the gut and the soul those words can render.

So I have been searching for some words that might help us with guilt.  I have found some words that we can memorize, or tape on the bathroom mirror or read over every night before you go to bed.  Just some words to try to put things in perspective for those of you carrying the enormous emotional load of guilt.  I hope you find them helpful. Because I know you are doing the best you can.

“It is not the strongest of the species

that survives, nor the most intelligent,

but the one most responsive to change.”

Charles  Darwin


“Guilt is a weight that will crush you whether

 you deserve it or not. “

Maureen Johnson, Author


“Guilt is a useless thing.  It’s never enough to

 make you change direction, only enough to

make you useless.”          

Daniel Nayeri, Author


“Worry does not empty tomorrow of its sorrow, it empties today of its strength.”                                                                  Corrie Ten Boom, Author, Nazi Prison Camp Survivor


“You can do anything…but not everything.”

David Allen,  Productivity Consultant


“Caregivers are not superheroes. Superheroes don’t get weary beyond their breaking point. Superheroes don’t hurt, cry, shake and struggle to hold it all together. Superheroes don’t cry themselves to sleep at night with a mixture of worry and exhaustion.”

Jeff Davidson, author


“Sacrifice – it’s difficult to handle any level of sacrifice if you don’t

receive acknowledgement of what you are doing, compassion for your

plight  and endorsements of your reason for doing what you are doing.

The platonic ideal that a family caregiver should be patient, generous

and strong. Sometimes we get this from images we see of others…

like Nancy Reagan caring for the President…

or from  past actions of others – “ my mother took care of her mother

without ever complaining, so now I must do the same.”

Or religious convictions, “God has placed this challenge before me

to test me or teach me.”

Barry Jacobs in The Emotional Survival Guide for Caregivers.


” You are not perfect.  You are merely the person trying to provide comfort, care, and love to someone who is succumbing to an illness or a condition over which you have little or no control.  What you can control is how you take care of you.”

                                             Jane Marks, Dementia Specialist, Caregiver, and Caregiver Advisor


Hope your burden is eased a bit.

As always, with love,









How Do I Know?

Recently, at church, the choir sang the Christmas song, “Mary Did You Know?”  It was one of those Godly coincidences, since on the way to church I was pondering “How do I know?”

How could Mary possibly know?  No matter that an Angel had visited and informed her. It was too hard for any person to fully absorb and understand.  Sometimes that’s how I feel about caregiving.  How could we possibly know? I read the books, I am even writing one. Yes, there are some pointers, some facts to remember – strategies to use.  Some things I have read have helped guide me.  And I certainly hope those suggestions I relay when speaking or writing, really do help someone out there in caregiving world.  But for some things – I just have no idea.

I write a lot about emotions. I am an emotional person.   I feel them, express them, and recognize them in others.  But sometimes I don’t know what to do with them. This week has been tough. My beloved dog – the best dog I have ever owned, died.  He’s “just a dog” but I loved him and he loved me and my heart aches.  Then I made the seasonal trek to the family graves, to put out the Christmas flowers.  I had good chats with each family member – except my brother.  I am still too angry at him to chat.  He left me too soon.  I can’t except it, can’t get settled with it, miss him way too much and am way too angry that he took care of everyone else and not himself and left me.  Of course he left others – his wife is still heart broken, his children are grieving, as well as my sister.  But right now I am grappling with my own feelings. I don’t have the energy for anyone else’s.

And there is my mother, balancing somewhere in that continuum – moving toward death but not there yet – not living either.  She has no joy. She is miserable and frustrated. I see it in her face, in her gestures.  All of us, family and private caregivers, as well as staff, are trying hard to give her some positive quality of life.  But is it working? We ply her with all sorts of her favorite foods to entice her to eat. We work diligently to keep her bowels moving, although she resists our efforts and even resents our tactics. She becomes dehydrated easily so we coerce, beg and plead for her to drink more fluids.  She is now receiving “power shakes” three times a day to provide additional nutrition.   We urge her to try to walk, to move, to pay attention. We urge her to speak loudly so we can understand her. We beg her to allow us to clean her teeth.

I visited her early in the morning  before I went to church. She had some congestion. She actually needs to cough.  The doctor has advised we should cup our hand and pound her back as she coughs.  I remind her of this as I pound and urge her to “cough it up.”  She holds back. It takes too much energy to cough.  She then begins to cry.  And I stop and ponder.  How do I know? How do I know when to really stop?

I know about end of life decisions. I have taken Hospice training. I have participated in many end of life workshops and presentations. I know when to say “stop” to chemotherapy or to say no to a feeding tube. But I don’t know how or when to stop this – bringing her snacks, begging her to drink, finding new ways to stimulate her bowels to move. How do I know when to stop? When to tell everyone else to stop?

You see, I have asked her. When she has had better days, I have asked her if she is ready to stop trying and she tells me no, quite firmly.  I have had family members who fought hard to the end, and then just went, and those who have said, “It’s time to stop, I am ready.”  But my mother doesn’t seem to want to fight in the right way, – she doesn’t want to eat enough, she doesn’t want to drink enough, she doesn’t want to take the pills, she doesn’t want to exercise.  So then, how do I know?

So it is a few days before Christmas and I am feeling very “Bah Humbug”.  I want to shout, “My brother died, my dog died, my mom in is limbo and I just want to hit someone!”  Everyone should want me at their holiday gathering!

But today when I stopped by the nursing home, she was there.  She looked at me with clear eyes, she smiled and said, “Hey girl! What are you doing here?”

And I was joyous to say, “I am here to see you!”

It was enough.  It made me want to say “Merry Christmas!”  It made me know that when the time is really right, I will know.  It made me know that being a caregiver is many parts pain and small moments of joy.  It made me know that I love her and she loves me.

Merry Christmas to all and I wish you many small moments of joy this holiday season. Or even just one.

The Big G

The holidays require many decisions.   Real or artificial?  Colored lights or white?  Red bows or green? Which cookie do you make for the cookie exchange?  Do you send a photo card or a regular card? Include a letter?  Maybe you just won’t send cards this year. What do you get little Susie?  Little Johnny sure has grown, will he need a large or extra-large?  Do you serve beef or turkey?

My family has struggled each year for the past four years about how to spend the holidays given my mother’s illness. It doesn’t seem to get any easier.

The first Christmas after her two consecutive broken hips, she was in the skilled nursing facility for rehab.  I remember calling my sister and sobbing on Christmas Eve morning. I had gone to the facility early in the morning, with my little dog who usually made my mother smile.  I brought a plate of home-baked cookies and I planned to go pick up mom’s  favorite fast food for lunch.  I hoped to spend the day with her  and make her Christmas Eve as pleasant as possible. She greeted me with venom.  She spewed that this was my fault, that I had put her there and that it was I who was mean, and cruel and wanted her to be miserable.

No matter that this was completely and absurdly untrue, I was exhausted. Her health and her care had dominated my life  for two months.    I felt guilty that she could not be in her home or even in mine but she was not well enough.  I sat in my car sobbing as I relayed the morning’s conversation to my sister.  She listened, commiserated and after a while, I was calmer and felt that I could face the wrath of my mother once again.

The next year, we took my mother to my sister’s home in a city four hours south for Christmas.  Mother wakes up many times during the night so my sister and I took turns sleeping in mother’s room.  Then on Christmas Eve mother came down with the virus that had been running rampant at her assisted living and we had presumed she had missed.  Changing her pajamas and the sheets in the middle of the night, cleaning her up and dealing with the mess and the smells was NOT what we had hoped for from Santa.

Then, 24 hours later, I succumbed to the same lovely intestinal virus and shortly thereafter, my sister.  That year, the phrase “Bah Hum BUG” had special meaning.

The next year, the family traveled here and last year we made the trip south with my mother.  We  hired caregivers from an agency to be with mother at night so my sister and I were able to get good sleep. No one got a bug. The biggest challenge was the actual trip itself.  Holiday traffic, heavy rain, a wheelchair and bathroom stops do not mix well.

This year my mother’s condition has been a roller coaster.   She has had very good days, and some very, very bad days.  She is not as strong as she was last year.  My sister and her children could travel to us. But to complicate things, there is now the cutest 18 month old grandson in the world living in the city in the South.  His “Gampa” and I want nothing more than to be with him on Christmas morning.  Unfortunately, his other grandparents, our son-in-law’s parents, are traveling from their home in Europe to be with him this year so my daughter cannot possibly travel here to be with us on Christmas.

Some have said, “Do what you have to do to take your mother, it may be her last Christmas.”

Someone else said, “Your daughter and her family should come to you, it may be your mother’s last Christmas. “

Someone else said, “You only have an 18 month old grandson once.  You are with your mother every day. You deserve to go be with your grandson.”

There have been numerous phone conversations.  We have discussed a variety of scenarios.  We have consulted Mother’s doctor. The bottom line is, this year no solution is going to be ideal.  And the fact of the matter is, the biggest challenge we are facing is the big G – Guilt.

That big G is the enemy of every caregiver.  It consumes, it steals sleep, it usurps joy, and in effect, can bring a caregiver to his or her knees.  It’s not just about holidays, guilt is the cloud that looms over living arrangements, medical decisions, financial decisions,  vacations,  family celebrations,  relationships and so on and so on and so on.  It becomes a constant struggle.  And no matter that every book on caregiving and every professional who works with caregivers says “Do the best you can – then let go of guilt.”  I ought to know, I have given that piece of advice to hundreds of caregivers.   But it is so much easier said than done.

The American writer and philosopher Elbert Hubbard said, “It does not take much strength to do things, but it requires a great deal of strength to decide what to do.”

I don’t have any sage advice for you Sandwiches this Christmas.  I am struggling like so many of you.  What I can do is once again say that you are not alone.  I am right here with you, climbing the mountain, fighting the big “G” of guilt and daily trying to decide what to do about some aspect of my mother’s care and well-being.

I can also pray and wish for you less guilt and more joy this holiday.  For me this season is a reminder of the promise of a better place, a better life – one where we will ultimately be free of pain and guilt and where our loved ones will be healthy and whole.   But no matter what your personal or spiritual belief, as we move toward the end of 2014, I wish you strength.  Feel a hug from me.  And eat some chocolate.

Bingo Challenge

Field trips happen occasionally as an activity choice at the assisted living where my mother resides. Unfortunately, often the residents who do not go on the field trip, are left with nothing – no activity, that is.  Due to limited staffing, if the activities staff accompany the residents who are going out, there is no activity for those who remain.

Recently, I volunteered to oversee the regularly scheduled bingo game while a group of residents went out on an “autumn leaf and lunch” trip. Suffice it to say, I am no bingo expert, I know the basics, but know little of the wide array of variations and nuances.

I thought it would be wise to seek the assistance of one of the resident “experts”. I knew from when she used to sit at my mom’s dining table, that Maxine was a loyal bingo player who was a stickler for the details. She beamed when I asked if she would help me. ” I will have to miss my bath though, they have changed bath times and now I am scheduled for one during bingo time.” I assured her I did not want to be the cause of a missed bath, but she insisted it was fine. She would much rather assist me!

The first sign of trouble occurred when Maxine and I went in to the activities room several minutes before start time. She wanted to make sure she could find a spot to sit near me, but that was also near an electrical outlet to plug in her oxygen machine. There were already three would-be bingo players in the room, wtih bingo cards in front of them. ” No, NO!” Maxine cried. ” They are not supposed to DO that.”

“Do what?” I asked.  They were just quietly sitting and waiting, with their bingo cards in front of them.

“Pick out their own cards! YOU are supposed to hold all the cards and give them out as the players enter the room. That’s cheating!” Maxine angrily explained.

I wasn’t really sure how that was cheating. I looked through the remaining stack of cards. They all looked unmarked and I was not sure how that was cheating and expressed my confusion to Maxine.” They play often enough that they KNOW which cards are more likely to be winners. That is NOT the way to properly do bingo so I am not going to play. That is CHEATING!”

What to do? I hated to take back the cards. The three early arriving residents didn’t seem likely cheaters. I knew one of the gentlemen had dementia and I felt certain he would not be so astute as to pick out the “most-likely-to-win” card. “How about if we let these guys have a pass, but I take the cards left and give them out like you suggest, as the rest of the residents arrive?” I asked Maxine.

“That’s fine, but I am still not going to play now. That is NOT allowed at the big time bingo games and I will not condone it.” She responded with her chin in the air and a superior tone.

“Ok but will you still be my helper? How about if you be the keeper of the card that keeps track of the numbers I call? That will allow me to fully concentrate and you can then review the winner’s cards.” I pleaded with Maxine.

She agreed to that and seated herself, got “plugged in” and was ready to go. Slowly the others trickled in and I gave out the cards. Randomnly, of course! In fact, I actually shuffled them a couple of times.

I noticed that I was “set up” over in the corner. It seemed a bit odd and awkward, so I moved the small folding table that held the stacks of the numbers over toward the middle of the room.  “NO, you can’t be there” offered Lynn. ” You have to call them from over there in the corner, that’s the way Sarah always does it.” Sarah was one of the activity staff members.

“But I thought it might be better to stand out here, so you can see me better,” I said.

“NO, you have to place the cards with the numbers you call up there on that rack on the organ. That way we can see them even after you call them. It’s the way we always do it.” Lynn insisted.

“Well, ok then,” I said, and I moved the small table back to the corner by the organ that is never played. Now we know, it’s actually the “Called Bingo Number” rack.

Finally, everyone arrived – even my own mother who detested bingo. She had never liked bingo and living in the assisted living had done nothing to change her mind. But her private caregiver had escorted her in, telling her she should at least participate when her own daughter called the game. I greeted Mom enthusiastically and she rolled her eyes in disgust.

Now we were ready! The next order of business was to decide what type or “pattern” of bingo we would play first. Several called out suggestions but I announced that we would first do “traditional bingo” since I was new at this and needed to get warmed up. I also asked them to be patient with me as I was a bingo “novice”. Several smiled and nodded. Frances, however, at the back table said ” Let’s get on with it, honey, We are already starting late!” I discerned then, that Frances would show no mercy.

I wanted to make bingo time festive, so I had brought one of my mom’s big band CD’s to play as background music. Francis quickly nixed that. ” It’s distracting – can’t hear the numbers, turn it off!”  A couple of others agreed with Frances.  I dejectedly complied.

Things were going pretty well, ” I – Forty Five. The letter I and Forty Five” I called out.”

“Move on to the next” Maxine said. “We’ll be here forever if you go that slow.”

Several of the residents had taken two cards. It was taking them some time to peruse the cards to find the numbers. Frank, with dementia, was really slow and would repeatedly look up at the number I held high and back down at his cards. I didn’t want to rush him.

“B- 12, like the vitamins, B- 12!” I called.

“Just say the numbers, no descriptions,” Maxine said, ” and move on to the next!”

“G – Fifty five. That’s G – Fifty five” I called as I held the cards up high.

Walter was seated with his back to me, and from his wheelchair,  stiffly tried to turn his head to see the cards. He was quite hard of hearing and simply could not hear me even though I was shouting out the numbers.” Walter, would it be better if you changed places so you could see the cards better?” I asked.

“He always sit’s there. That’s his bingo seat.” said Frances, as Walter shook his head no.

” B seventeen. That’s B SEVENTEEN” .

“Honey don’t say it that way. Don’t say ” seventeen”, say “One – Seven”. That’s the way you are supposed to say it.” This of course, was from Frances.

“Ok then, sorry, B – ONE SEVEN!”

Maxine waved her hand at me.” You said that one three times. At LEAST keep it to two times. Now move on!”

“Bingo! I have bingo!!” someone shouted. Finally, thank you, Lord. How many games was I required to call? How long did bingo time normally last? I was now prespiring. I took off my sweater.

After Maxine confirmed that the winner was truly a winner, I distributed the quarter due and we discussed what the next game would be. Yes, the winner recieved a quarter. The Activity Director had previously informed me that the winners MUST receive a quarter. She had tried to change it once and there had been an uproar. She had left me a brand new roll of quarters.

We determIned that this game would be an “X”. Wow, that would be complicated, but whatever.

“O – Three, Three. That’s O – Three Three”

“N-Seven Two”

“No” cried the group. “You don’t call “N” in X bingo!” Ooops. Maxine looked at me disgustedly.

At this point, I saw my mom leave the room. her private caregiver shrugged her shoulders and mouthed at me ” I tried”.

Eventually, someone shouted “Bingo”. Maxine confirmed. I gave out the quarter with great enthusiasm. I looked at the clock.  We had only been playing for fifteen minutes.  It seemed longer.

“Cover Me, let’s play Cover Me, you have to cover the whole card,” someone shouted. Good grief, cover the whole card?? how long would that take? But I smiled and said, “Sure, the next game will be cover me”.

” N – I can call “N’s” Now right?” I asked.

Maxine barked, ” Of course, it’s COVER ME!”

“Ok, just checking. N- Two Five!”

From Frances, ” Oh, say Twenty Five!”

Me, “But you told me NOT to do it that way!”

Frances, ” I know, but now it’s getting boring so do it the other way.”

Me. “So, how about if I alternate? Would that be ok?”

Frances, “Sure honey, whatever you want to do.”

After another game of “cover me” and then back to the “X” pattern, I was hoarse and felt I had done my duty. I announced , “How about ice cream now? Would you all like to have some ice cream? I brought two different flavors!!”

“You brought ice cream? Well, why didn’t you say so? Sure, we’ll take ice cream. What kind do you have?” and bingo was officially concluded.

After I had passed out the ice cream, spoons, and cute halloween napkins, everyone was eating and murmuring among themselves. I was busy taking up the cards and straightening.

From the back of the room I heard Frances shout, ” Honey, we forgive you for being new at this, since you brought us ice cream!

My mama didn’t raise no fool.

A Surge and a “Diamond”.

We are experiencing a surge.  After an entire summer of battling an antibiotic resistant urinary tract infection and impacted bowels, we are finally back to our baseline. I have to admit, I was not sure we would get there.   I remember being told by a good friend with much experience in the field of aging, that when an older person is ill, the rule of thumb is about “one day down, four days to recover.”   I knew my mother had been ill for quite some time – weak, delirious, refusing to eat and without specifically doing the math, I had known we were in for a long recovery. I just hoped we would be able to return to the level of awareness and ability before the summer “fun” had occurred.

And finally, we did see improvement.  First her clarity increased.  Then she was able to feed herself.  Those eating utensils no longer seemed like totally unfamiliar and mysterious table toys.  Then she began to have sensible conversation.  Her table mates at the assisted living were thrilled to have their chatty dinner pal back.  And finally she was able to use her walker instead of being in the wheelchair all the time.

Then came the question, ” Where is all my jewelry?”  Mom asks this question every time she “comes back” from a bout with illness.  I showed her the drawer, in the small chest where we keep the jewelry we brought to the assisted living. It is right beside her blue chair where she spends most of her time.  I pulled out the box and we went through it piece by piece.  Then as usual she asked “But didn’t I use to have…? ” and we go through the list of some of the jewelry that we did NOT bring to the assisted living.  Mother was never a huge jewelry wearer. But she did like earrings, a bracelet and maybe a pin on her silk neck scar for Sunday church. In fact, she was known for her pin collection.

When we cleaned out mother’s large house, and moved her to the assisted living, my sister, daughter,  I, including Mother, went through all her jewelry. We decided what she would keep and what each of us would take home with us.  I actually did not take any….I had enough of Mother’s “stuff” already stacked in my basement!  She had given me a special ring years before and that was all I needed.   In addition, my sister took a few of Mother’s expensive pieces to her safe deposit box.  We just didn’t feel comfortable having those pieces at the assisted living. Turns out, that was a wise decision, as a couple of pieces of jewelry that we did bring are missing.

Anyway, both of Mother’s tablemates wear quite a bit of jewelry. It is primarily costume jewelry. In fact, Joan admits that she gave her daughter her “good” diamonds and the large ring she now wears is “fake”.  With this latest surge of feeling good, Mother asked me about her rings.  I again explained that we just didn’t want to risk them being stolen.  “Would you like me to get you a fake diamond like Joan’s? ” I asked.

“Yes”, mother answered.   While I was a bit surprised, off I went to the local department store.  Before, Mother had thought such things were “tacky” but if it made her happy, then so be it!  I selected the most sedate of the cubic zirconia choices that day. I didn’t think Mother’s tastes had changed that dramatically and it was on sale too!  For $16.95 I purchased a lovely ring with five “diamonds” across the band.

Mother was thrilled.  She smiled and flashed her ring to her private caregivers and table mates, then rolled her eyes when they admired it, as she was well aware of the “joke”.  I sighed with great relief. It had been a very long summer.  I said ” Mom, it sure is nice to see you happy and smiling.  Two trips to the ER with you and all that we have been through this summer, just about did me in!”

Mother looked at me with incredulity.  ” What? I was in the emergency room twice? Why, didn’t someone tell me?”

What a Week

I am not sure anyone will even believe the week I have just experienced.  But trust me, it is true.  Maybe many of you have had similar experiences. If you are a “sandwiched caregiver” you probably have.  Warning, this blog will contain graphic descriptions and content, so if you are not a TRUE caregiver or have a weak tummy, then don’t read this one.

My mother has been battling a urinary tract infection for about a month.  Our first problem is that while her symptoms are always exactly the same, they don’t meet the most typical symptoms and thus the criteria to prescribe antibiotics.  In the beginning, she just becomes a bit more cloudy than usual.  Then the cloudiness increases. Then we begin to have more incontinence, especially at night. She is very cheerful but there is a bit of a glaze in her eyes. Then her balance gets even worse than usual, she becomes physically weaker, and grouchy. Then she becomes quite stiff, starts to lean dramatically to one side, and then she begins  to move toward delirium.  This has been her pattern for about four years now.  AND she has also become resistant to many of the antibiotics that are used for a UTI.

Then there is the issue of just when we get the urine specimen and send it off to the lab for the culture so that we can know just what kind of bacteria it is we are dealing with so we know which antibiotic to use.  The assisted living where she resides, tends to wait a bit too long before even taking the urine sample, then it may take several days to receive results and by then she is way into delirium, not eating, not drinking without a fight…and things just spiral downward. AND THEN it takes her much longer to get better, back to baseline.

AND my mother has always been very sensitive to her bowel movements. Here we start the graphic and gross part.  Her whole life she has complained if she doesn’t “go” each day.  I, personally, can go a week, and I just feel fat. But not “going” really affects her and makes her feel unwell.  Since we have been in assisted living we have had a couple of instances of being impacted…poop that just won’t come out.  We urge her to drink plenty of liquids, (which also helps with the UTI prevention) fiber – as much as we can manage to convince her to eat, and she “takes something” every other day, that her doctor has prescribed to help her bowels move.  In addition, her sphincter muscles don’t work well at all.

SO, about a week ago, after being on a strong antibiotic for the most recent UTI, we were not seeing any upswing at all. In fact, after four days of treatment, she seemed to be worse and was still running a fever. She was not eating and she was not drinking much at all despite our best efforts. Finally, we decided she might be dehydrated and maybe we need to go to the ER.  Each time she experiences this major delirium ( as in has no idea where she is, tries to eat her napkin and not her food, etc.) someone invariably suggests to me that she may be having mini strokes sometimes known as TIA’s or maybe this is just her dementia worsening.  But dementia doesn’t worsen overnight and we have had many CT scans and MRI’s and they NEVER show a TIA.  In addition, she has very low blood pressure, low cholesterol, and her neurologist tells me that the chances of her having a TIA at this point are quite unlikely.

Mother has also been complaining of stomach pain, for about ten days.  The nurses listen to her bowel and tell me she has good bowel sounds. She has small bowel movements so the consensus is, it is just gas.  But on this particular day she seems “bad enough” that we go to the ER.

We go to the large, super hospital ER. The one that advertises excellence, uses the word “premier” in its ads, etc.  And our experience is this – young female resident seems to know a lot about geriatrics. She orders several tests, including a CT of the head just in case, and an abdominal X-ray.  She also says Mom is dehydrated and starts IV fluids.  After nearly  12 hours in the ER, with not one single person asking if I need anything, and having been told that mother cannot be given her Parkinson’s meds unless she is admitted, her delirium becomes worse, she becomes more stiff and hard to handle.  She is combative, actually slaps me and tells me to “straighten up” when I try to stop her from pulling out her IV. And then the Chief Resident appears, a  young man, and she screams at him, “DON’T touch me!” He asks me to tell him why we came to the ER. I repeat my story of her symptoms and events of the past few days and he informs me that all her tests are negative, that in his opinion this is merely her dementia and that he is discharging her.  I dispute his assessment and assure him that I know the difference between dementia and delirium and this is NOT just worsening dementia.  He asks if I am a nurse, I say, “NO”. He says “You talk like one.”   I say, “Thank you.”

We then begin the wait for transport back to the assisted living. One and a half hours later, it is now 1:00 a.m. and  the nurse says “ It is a wild night tonight and the transports are all busy. It could be another couple of hours.”  So I have my husband get the car, and we literally pick Mother up and put her in the car ourselves.  We are back at the assisted living in ten minutes.  I, of course spend the night with her.

We see little improvement in the next day or so. But finally late Sunday she seems a bit better. I decide we CAN make the neurology appointment we have scheduled for Monday. I desperately want her to see her neurologist as I want his opinion on this.

Monday morning, mom is pretty chipper, seems to be much more herself and off we go to the neurologist.   He examines her. She is able to tell him where she is and answer some question.  She gets her age wrong, and the year wrong and the month wrong, but other than that, she makes perfect sense. He is livid when he hears what we have endured. He again explains that dementia will not worsen overnight. He restates that she is so very fragile that the slightest issue, such as a UTI, constipation,  a cold or most anything, can send her in to delirium. But that it is an acute issue and should be addressed.

The next day, Mother has declined from the energy and clarity we saw on Monday. I attribute it to the remains of UTI recovery and from exhaustion from the doctor visit. On Wednesday she is even worse, cannot keep her eyes open, and is clenching at her stomach and complaining of pain.  At noon, I make the decision to take her back to the ER only this time we go to the smaller, slightly less prestigious hospital, as I am “done” with the big, “premier” place.

The ER staff is quick, efficient and courteous. They repeatedly ask if I need anything. They are polite and begin tests immediately. When I see my mother begin to stiffen and become more anxious, they notice as well and ask about it.  I explain that she is due a dose of her Parkinson’s medication, and they bring her some!!! They too feel she needs IV fluids, plus they do a few more tests and more extensive tests on her abdomen. After five hours, they conclude, there is nothing else wrong, EXCEPT that they can tell from the abdomen CT that she needs to “poop”.  The doctor actually says “There is no blockage but she has a LOT of poop in there that needs to get out.”  I ask if they can do an enema. She says “Not in the ER. We could if we admit her, but there is really no reason to admit her.” So back to assisted living we go.

She is still quite delirious and so I spend the night with her again. I keep hoping we will see improvement but we don’t.  She is quite “out of it” and I feel out of answers.  Finally we decide to use a suppository to get some poop out. The poor woman just can’t get it out. It is stuck, so I do something that, the first time I did it was quite gross, now it is simply a necessary task.  I use my finger (with a glove and Vaseline) to “help it”. And we get a good bit out.  But I can feel more. But after half an hour on the toilet Mother is exhausted. It is now evening, so we put her to bed and we plan to do it again in the morning.

During the night Mother becomes extremely restless. She is thrashing about, and throwing her legs over the side of the bed.  We are afraid she will literally throw herself out of the bed. She is talking non-stop but making no sense. She is reaching for things, her hands grasping at the air. She seems totally miserable.  In the morning, one of the nurses, the new one, asks if I think we should go to the ER!  I laugh and say “We have been to two ER’s this week. Apparently, there is nothing wrong with her except she needs to poop!!”  I then ask about an enema. The nurses tell me they cannot administer an enema without a doctor’s order and it is the weekend. However, in the event an enema kit showed up in her room and her FAMILY administered one…well, gee, what could they do?

So, my husband is dispatched to go to the drug store.  My mother is asleep, yet she is still muttering and will not wake up to take her meds. We massage her arms and her back, try to sit her up in bed, I use a wet washcloth on her face and it takes FOREVER to get the crushed pills that we have placed in yogurt into her mouth.  Our private caregiver and I lay her back down and strip her from the waist down. Then we place paper pads that we apparently brought back with us from some previous hospital visit and plastic garbage bags under her. It’s a good thing we found those pads. I am told the assisted living has no “clean ones”.   Then our angel of a private care-giver assists me in giving Mom an enema.  And then I actually have to resort to the “finger help” as well.  BUT WE get a TON of poop out!  An absolute ton!!  We then are able to clean up our mess, put clean sheets on the bed, clean mother up so that she is now lotioned and sweet-smelling and let her rest after her ordeal.

And after about two hours more of deep sleep, she awakens.  She tells us she has to go to the bathroom. We assist her to the potty and she goes. She then says she is hungry and wants potato chips. It ain’t so healthy, but it’s food, so I comply.  She also decides she wants grapes. So grapes and potato chips it is.  An hour later she asks for a cereal bar. (I buy the healthy expensive ones with protein, fiber and fruit).  THEN its dinner time and I feed her almost everything on her plate!  NO fussing, no balking, just eating!  And then she drinks a lot of water!  And THEN she eats an entire small container of orange sherbet!!!  The nurse jokes that it is because she now “ has room in there for food!”

After another trip to the potty she is tired, and we put her to bed. She falls in to a quiet sleep and I come home to my own bed and my supportive and caring husband  But I am nervous the phone may ring at any moment.

It seems that hospitals don’t really want you there unless you need an expensive surgery. Their purpose seems to be to send you BACK not bring you in and help make you well.   Interestingly, I have NEVER received any kind of satisfaction survey from the larger, “premier” ER. Yet just two days after our visit to the smaller ER, I received a satisfaction survey to fill out and mail back, with postage paid.  I was able to express my satisfaction for their customer service, their kind attention, their clear explanations and quick service.   I did express my disappointment that the “poop” problem was not taken care of at the ER.  But our experience there had at least been a much more pleasant one, with staff who seemed to care and understand.

Bottom line, as I have said before, our healthcare system is so absurd, so convoluted and often SO very absent in the “care” aspect.  And this caregiving journey is a long and extremely challenging one. It is exhausting and confounding and complicated.   I often think that we simply live too long.  There is something to be said for getting hit by a bus while we are still functioning at full speed.    We have learned to “fix” many medical issues, but we cannot necessarily ensure quality of life.

And, each person that offers help, concern and assistance is a blessing, whether it be a nurse, physician, friend, husband, sibling, child or paid caregiver.  Unfortunately, sometimes it seems they are few and far between.

And now I simply pray for a good night’s sleep – for my mother and me

You Better Straighten Up!

The dreaded UTI is BAAAACK!

We have been battling it for a month. Three days of a new and stronger antibiotic, one to which she is not yet resistant, doesn’t seem to be working like we expected. She still has a fever, major delirium has set in, she is complaining of stomach pain, and oh yes, then there are those who are telling me her delirium is simply the worsening of her dementia. A week ago, she could tell you her birth date. She could carry on a conversation. She knew who she was, where she was and could eat like a normal human being. We even went out to eat last Sunday. This morning she was trying to eat her napkin and was on another planet.
Anyway, I did what I had vowed not to do. We went to the ER. First ER Doc we saw was a sharp young woman. She was knowledgable about geriatric issues and was quite competent. She felt we needed tests to rule out some things, even a CT Scan just in case something was going on in Mom’s head. She felt IV fluids and IV antibiotics were necessary. She was going to admit Mom.  Then we were visited by our second ER Doc. He was higher in the hierarchy of residents and as HE began to examine Mom she sat up and pointed her finger and said “Don’t you TOUCH ME!” He agreed with the tests but hen said he did not feel she needed to be admitted, that she was “old and had dementia” and would be better off going back to her assisted living. He would do one bag of IV antibiotics but no fluids. She could continue the antibiotic back at the assisted living by injection. So there.

After he left, Nurse Karen came in. She said “Why aren’t these fluids going?” I said, “Dr. So and SO said they were not necessary. Yet, Dr. Sharp Young Woman said they were.”

Nurse Karen looks at me conspiratorially, and said, “I trust her more than him, so we are doing the fluids.”
Now for the fun part – My mother’s delirious conversation while the fluids were flowing.

They decided to insert a catheter to get some urine. As the nurse was finishing, she said to Mom, “You did great!”

Mom flashed her a  sarcastic grin and answered “Oh, to be so lucky.”

She kept pulling at the IV. As I leaned over and took her hand and said “Mom, don’t pull on that.” She belted me! Up side of the head! And said “Jane Reed, (yep, I have told you all before, when she’s mad she uses my first and middle name) you need to straighten up and stop this foolishness! Act like a lady!” This came from the woman who was naked from the waist down and who repeatedly threw her blanket off in between attempts to pull out the IV.
A few moments later she says “Let’s have a truce. Let’s talk about your shoes. I don’t remember those that you have on. But I remember your brown ones.” When she talks fashion that means the meds must be working.
She rests a bit and then says “You know, you are my first-born child, and no one can change that, but you need to straighten up.”

I said, “Yes, ma’am.”

My brother the doctor calls for an update. He can hear her fussing and fuming  in the background and he asks me to let him talk to her. I hear him tell her to be nice, behave herself and listen to what I am telling her. I take the phone back and we finish up the conversation.

After a bit, she sits up, points her finger at me and says, “You better call your brother and tell him all about this!”

I said, “Sure Mom, great idea.”

A few minutes pass, she sits up and says, “Now seriously, I want to ask you something.”

I said “Ok, what do you want to ask?”

She said, “Just what do you think about your Mom and Dad?”
I said, “Well, frankly, my Mom is driving me crazy”.

She said, “Really?

I said, “Oh yes, she’s killing me.”

She said, “Well I took care of my mother and it was fine.”

I said, “Well, maybe your Mom was not as difficult as my Mom.”

She said, “Maybe not”