Epilogue

     I have not written in this blog for a long time.  Ma went into the hospital at the end of June and has been in an assisted living residence since September of this year, 2010.  The 2 months in the hospital were difficult as I had to refuse to take her home when her immediate physical ailments were treated.  This left me open to all forms of pressure from the "Sisters of Charity Hospital".  They certainly didn't seem very charitable to me.  They tried shaming me into taking her home in spite of my inability to provide her with 24 hour supervision that she needed.  Ma is not that bad physically, but she has vascular dementia.  This affects every aspect of her life and puts her in great danger when she is alone.  Her eccentricities and lack of cognitive ability need some form of regular guidance to insure her safety.  The social workers at the hospital informed me that Ma was incompetent and then wanted to send her home where she would only be cared for sporadically by me.  Quite frankly, by that time I was totally worn out and had nothing left to give.  I hadn't slept soundly in the 6 years I took care of her, the last year taking care of her and staying with my father in his final months of his life.  In the words of "Lilly Von Schtupp", "Let's face it I'm pooped".   The final months of Ma's care included chasing off imaginary intruders and bugs that she saw all over her walls at night.  Kind of spooky and heartbreaking.  The social workers at the hospital suggested that I was treating her with extreme cruelty by not taking her home.  It is hard to hold up under those types of attacks when your focus is on doing what is best for your loved one and you feel guilty as hell already.  Thank God I had the support of my brother who stepped up to the plate and handled the final negotiations when I ran out of patience.

     Ma was placed in a residence 75 miles from where we all live but the people at the facility are awesome.  I don't think I would move her if I could.  In these days of poor eldercare I feel blessed that Ma fell into their care.  They have treated her and all of us with respect and dignity.  Ma is not happy but she is comfortable and has a lot of freedoms she did not have with me in the city.

     Ma was on the "Watch List" for 2 month's as she was considered a flight risk, a wanderer with undefined intent.  Immediately upon being removed from the "List" my brother went to visit and she was not in her room.  He walked the halls and when he was unable to find her he reported this to the nurses' station.  The facility went on high alert and was locked down.  Attendants walked the grounds and couldn't find her and it was assumed she had wandered off.  A second check of her room found it still empty, but on the way out Ma emerged from the bathroom where she was doing her laundry in the sink. She won't use the facility laundry service as she is more than a little distrustful.  I guess that having her ditties in the hands of some imagined pervert is too much for her to accept.  Anything that easy has to have something wrong with it.  So she sneaks into the bathroom and does it herself and hangs them on the back of her tri-fold dressing curtain so no one can see.  Everyone knows and just leaves it alone.  If she wants to get some vicarious pleasure out of breaking the rules that is one that is ok in their book.  Better than if she was running naked through the halls or inciting a riot.  She is described by everyone as a sweet lady with peculiar habits, but peaceful.

     The most disturbing thing to me is the decline of Ma's cognitive abilities.  She is stuck in 1951 and repeats the same things over and over again, each time like it was the first time and I fear she will pass into the locked part of the facility with less freedoms sooner than I am ready for.  Her spirit is diminished and she has a few rehearsed lines granting everyone amnesty for perceived injustices that belie the truth that she is mad about getting old and not being able to do what she used to do.  She is ready to go but her maker hasn't made her reservation for the final ride.  We watch as her life force ebbs away and wish her life had been happier.  The ultimate martyr, giving up her life for her children,  allowing that quest to become the sole definition of her being.  A noble undertaking for a Irish Catholic Maven whose upbringing  insured that responsibility, duty and guilt would insure happiness in the hereafter.  I wish she would have been more concerned with the here, the present, her life.  I would have preferred she lived out loud and fully and her current life came to an end while skydiving or drowning while swimming naked in the reflecting pool at the Washington Monument, something fun.  The loneliness of her decline is intensified by her deafness and her lack of socialization skills.  She has always avoided plain old social contact as some kind of self-inflicted punishment for being Catholic.  God love her.

     We all took the 1-1/2 hour trip to the retirement residence and brought a turkey dinner in for a small family feast.  The staff was fabulous and helped in every way possible.  There is a small kitchen/dining area for private family gatherings and they insured everything was just right for our visit.  Ma was uplifted by the presence of the grandchildren but quickly settled into a disconsolate funk, speaking little and hunched over.  Her appetite is better than I recall and she looks fit physically but I fear for her emotional and cognitive health.  Being deaf leaves her living in her own head,  discerning the intent of all social interactions with a mind that is indeed failing.  What a horribly lonely end to a dutiful life.

    I hope to get to see her at least one more time before Christmas.  On Christmas Eve I plan on brining a small re-plantable Christmas tree for her holiday, in addition to some holiday flowers.  I am the only one in a position to visit that day as my brother and my children have responsibilities of their own.  If I could give her anything for Christmas it would be "One Great Day".  Free from regret and loneliness, free from physical limitations, free for one day to be herself and not thinking about anyone else.  Merry Christmas Ma.

    

Shanty Caregiver Loses Position To Ma's Little Old Man

     This may very well be my last blog under this heading.  It appears I have lost my Shanty Caregiver job to that little old man that visits Ma and sits at the kitchen table when no one else is home.  She was admitted to the hospital on Monday for breathing problems and a urinary tract infection and when her friend came to visit, floating outside her third floor window, the staff became alarmed.  With a little further questioning Ma revealed that she wouldn't stay in their hospital because of her visitor and the bugs that covered all the walls and her bed.  They seemed to think this was some kind of delusion and called to ask me if this was a regular occurrence and how I had been handling it.  I suggested they put Ma in the hall, close the door, make some noise, reopen the door and tell Ma that you had chased them away.  They asked how long this had been going on and I really couldn't remember.  When you spend years chasing away imaginary intruders and shooing varmints it is difficult to pinpoint where the madness began.  I told them about Ma's TP core collection as I was concerned that they may need to contact their supplier if Ma was to stay any length of time.  They intimated to me that they felt Ma may have misplaced her sanity, I asked them what was there first clue.  They told me she needed twenty four hour supervised care and wanted to know how I was going to provide it.  I told them that since they had made a diagnosis that she needed that kind of care, and I was unable to provided it,  that they were responsible for her well being and couldn't release her.  They reluctantly agreed and set about the task of declaring Ma incompetent so she could be placed in a safe environment.  We are currently awaiting the declaration of incompetence from the staff psychiatrist to start the process.  


     I went to the hospital this afternoon to try and calm Ma down.  It had the opposite effect and she has expressed considerable rancor towards her Shanty Caregiver.  She probably would have made assessments about my lineage if she wasn't so intimately  involved in that reproductive miracle.  She refused to put on her hospital gown and was walking around in street clothes with her house keys saying she wanted a cab.  They have prescribed Haldol a powerful anti-psychotic medication that they assure me will make her more cooperative.  I am really torn as Ma has been declining fast and I suspect that the downward spiral is going to pick up speed.  At some level I feel like I have failed her while at the same time feeling a freedom I haven't known in years.  I am intermittently free, guilty and afraid.  Free to reclaim my life which has been on hold a long time.  Guilty of putting the woman who raised us kids,  with little help while working as a waitress, into a sometimes heartless system.  Afraid of being alone when my time comes, as it does to all.  


     I want to thank all of you for the encouragement and prayers offered during this last two years.  The most difficult time in my life.  Losing my Father and Sister was painful but not as painful as watching Ma decline over these last six years.  The unexplainable fears she experienced, the inability to reason out the simplest things,  the loss of her personal freedoms, and the loss of her dignity.  This offering has been quite cathartic as I had no place to go to express my frustrations.  I explain and reveal myself better in writing than I do in person.  I am thankful to Ma for her insistence on a Catholic education where the nuns honed my writing skills and wit, sometimes forcefully.   All Mothers have a special place in my heart, especially those who get little or no help from absent or disinterested Fathers.  Ma's influence in my life is unquestionable and I guess a little guilt is a small price to pay for her lifetime of sacrifice.  I hope this blog has been a source of comfort and amusement to all who have followed it this year and hope you find my newest offering, "The Mad Rants Of A Maladjusted Miscreant" equally entertaining and insightful.


      

Never, Never, Never, Never, Never, Never, Never,...Well, OK

     As most of you know, I have been taking care of Ma a long time.  I have recently been really concerned with her physical and mental health.  She hasn't been out of bed for four days starting last Thursday and I have been pestering her to go to the hospital and she has flatly refused.  I asked twice on Friday, twice on Saturday and three times on Sunday.  I called my brother to have him talk to her and he showed up about one PM this afternoon.  Before he entered the apartment building I talked to him on the phone and expressed my concern that she would not cooperate with his pleas either, he assured me he would try but promised nothing.  Seven and one-half minutes later he called me back and said he and Ma were on the way to the hospital.  It is certainly in her best interest, but I am kinda pissed that I spent four days begging her to go without any level of success and in seven and one-half minutes he has her in the car and on the way.  I really feel kind of diminished and hurt.  I have devoted six years of my life to her care and my brother, who has young children and can't help often, gets his request met in minutes.  It took longer for Napoleon to surrender at Waterloo than it took for Ma to go to the hospital with my brother. 

     It is kinda like Dad's final months when the German Blond Beauty Gretchen was his hospice nurse and I  would talk to Dad about his declining condition and tell him of observations I made and he would ignore me.  Then the Blond Bombshell would tell him exactly the same thing and he would report it to me like it was the first time he heard it.  Do Shanty Elder's automatically discount their primary caregivers observations out of spite or is it that I have become a noisy gong that sounds regularly that is never heard?  I lived in South Buffalo near the steel mills much of my life.  I went away for several years and returned to find I had trouble sleeping due to noise from a drop forge that had been operating since I was a child.  After one month I didn't notice it anymore.  Have I become Ma's drop forge?  I know she is angry at me at the loss of her independence.  We have had several "Come to Jesus" meetings over the last few years when her anger at me turned outward in some delusional rant.  The last time she exploded I told her, "You are up to your ass in buttermilk and you complain like your being poisoned".  She usually quiets for a month or more when I invoke her "Almighty Jesus'" name.  I know she is grateful for the attention I pay to her needs but she resents it at the same time.  She acts like a petulant child who pushes his parents to the limit just to see them dance.  Maybe I am not the Ringmaster in this delusional circus, but merely one of the acts.

     I must confess that I see that the end is nearing and I feel deep fear and inadequacy at the prospect of her dying under my care.  With Dad it was a fore drawn conclusion that he was going to die and I eventually reached a place where I was comfortable with it, additionally Dad and I  had the same plumbing.  Mothers are special creations to their sons.  Madonna's that are above being female, they are completely holy.  Ma's delusional forays leave me impatient, agitated and feeling guilty.  She doesn't have a terminal illness with foreseeable outcomes, she will expire without warning in some ungodly situation where I will have to do and see things no son should ever be exposed to.  I must confess I relish her admission to the hospital today and might be in a place where I need to put her into a assisted care facility.  I guess I just want my life back.  I have taken care of others for too many years and need a little TLC myself.

     I feel guilty about the way I am thinking.  I am torn between concerns about whether I am being selfish or objective.  What is in Ma's best interest at this point.  She doesn't take medicine without being cajoled.  She doesn't eat properly.  She has delusional episodes.  She costs me more in TP expense than I have spent on myself my entire life.  I am confused and concerned about what my family will think of the callous way I will have to act in order to pull off putting her in a home.

  

Check That Door Again....It Might Be Locked

     I came home after work, put my key in the dead bolt that wasn't engaged.  When I placed my key in the handset I found that it too was not locked.  Ma makes at least 20 trips to the door every day and night and whatever the position of the locks she reverses them.  Some times the door is not locked at all, sometimes it is half locked, and sometimes she gets it right.  I know when she is particularly agitated because she puts a kitchen chair in front of the door so, I would guess, she could pretend to hear it when that dastardly old man tries to come in and sit at the table.

     There is a light switch by the entry door that turns on a wall light above the kitchen table.  Often when I try the switch the light does not come on.  I replaced a perfectly good bulb and the light still didn't work.  I began to suspect what I found to be true, that was that Ma crawled over the kitchen furniture to turn the light off at the fixture.  The logic baffles me, why would you climb over furniture to turn off a fixture that has a wall switch in plain sight.

    The TP core collection grows faster than I can throw them out.   What is she saving them for, I am afraid of the answer for that one.  I left for work having seven full 1000 sheet rolls in the closet and returned to find 6 cores and 1 roll.  Certainly better than 7 cores and 0 rolls.  What the heck is she doing with that paper.  I am afraid to ask.

16 Rolls And What Do You Get...

     I put a brand new roll of TP out this morning and found only a core when I returned 10 hrs. later.  I have been looking for the elephant I know Ma has hidden somewhere all year.  There must be some large being that Ma is cleansing with TP for some rescue group.  It is the only thing that explains this unnatural use of TP.  Either that or she is rolling them out the 9th floor window in celebration of some event I am unaware of.  Their are plenty of parades in Disneyland and Ma has been dancing with the Fantasia mushrooms all year.  Perhaps Disney has a parade around the ring road at Marine Drive when I am away at work, that would help explain the TP loss if Ma was using it as confetti to greet Mickey Mouse and Goofy, especially Goofy.

     Ma engages me in some deep conversation everyday and complains that she can't here my response.  She hasn't heard my voice, particularly low, in 5+ years.  Today she wants to get some Father's Day cards for the men in the family and she vacillates between wanting to go herself and having me do it for her.  At this point I believe I will do it myself, it seems the path of least resistance.  She is aware that she cannot go anywhere by herself and is afraid of being anywhere in public where she may be required to interact verbally.  Kinda scary.

     I guess I should be glad that Ma is current and knows what day is coming.  It has been a long time since Ma has cared what day it was.  She forgot my birthday and all the kid's birthdays so far this year and her sudden burst of awareness is quite welcome.   I kept her medicated through my sister's death,  funeral and for about 2 months afterwards.  She then became depressed, which I believe is quite normal for all she has been through this last year.  I believe she is breaking through her lethargy at this point.

     Ma's health is still suspect and I just gave her some of the magic, sleepy time cough medicine as she is  not sleeping due to her hacking.  She still claims she has a cold, same story since December, but her COPD is getting worse and I think she will be on oxygen before too long.  She is taking her other meds regularly since our "Come to Jesus" meeting last Sunday when I read her (wrote her) the riot act and threatened her with full time in-patient eldercare.  This is the second time we had this conversation over the last year and each time it has insured an immediate change in attitude.  This "Coming to Jesus" thing really works as getting an old Irish Woman to stop complaining is at least as powerful a miracle as the parting of the Red Sea or making a blind man see.

    

An Apothecary Discussion

     Came home from a weekend away to find all of Ma's meds not taken.  At first I thought My brother had not come to check on her, but he did and said she refused to take the medication.  She seems to think that her medicines are the cause of her forgetfulness.  So upon returning from work this evening we had a "Brother Love, Come to Jesus Meeting" concerning her medications.  At first she denied not taking them and later relented and again blamed the medicine for her logic and memory loss. I wrote her a letter, in bold 22 font courier lettering, the only way to communicate with someone who is severely hearing impaired and near blind.  I reviewed my efforts in regards to her medications outlining how I had taken them all to the local apothecary to determine if they were appropriate, not improperly prescribed, and not mind altering.  I got the impression that she felt I was medicating her unnecessarily.  While I must confess that I delighted in the fact that her cough medicine makes her drowsy an puts her to sleep, I am very cautious concerning her medications, all for her heart and aricept for her dementia.  All very necessary for her to stay alive and as current as possible.  I guess I'll have to stop giving her the cough medicine which is the only thing that affects her adversely.  I went on to tell her that it was unfair that I cannot go away for a couple of days and have her cooperate with my reluctant assistants.  She moved right to Irish Guilt, saying that maybe I would be happier if she were in an old folks home.  Sure, pull out all of the stops to try and make me feel responsible for her belligerence.  The truth is it is probably her next stop if and when I can no longer guarantee her health and well being.  I will not tie her down and force medicine into her but will send her where she can get the medicine she requires.


     Ma cleaned the apartment in my absence, if that is what you call it.  She moved stuff around and used 9 rolls of brawny hand wipes and put all the refuse under the sink in her special place.  I spent two hours cleaning up after Ma cleaned up and must confess she has become a major source of aggravation.  She also hand washed her undergarments which were hung everywhere in the bathroom.  There are some things a son should not have to see.  I rewashed the dishes, dumped the uneaten cereal she saves, and generally cleaned up the mess made over two unsupervised days.  


     I would like for Ma to expire quietly and peacefully in her sleep.  I don't want to subject her to the humiliation of a Nursing Home and I sure to want to see her have a meltdown with her delusional visitors while I am away.  Life is surely comprised of two childhoods, one of fearless youth with good times and a sense of invulnerability.  The other, a fearful desperation worsened by diminishing abilities and mobility.  It is difficult to watch and more difficult to participate in. 

Stop Looking For Logic In A Delusional Worldgringmaster

     Things have been going pretty good lately.  I find less angst toward the daily challenges of my eldercare world.  I seem to have transcended into a lethargic state, much like a punch drunk fighter.  You get hit with so many lefts you find yourself hoping for a right.

    Today started as almost any other, me in the bathroom when Ma decides to knock on the door to see if anyone is in there.  She then goes to the door and tries the lock, returning to bed until I leave.  This morning on my way out I noticed an unusual amount of TP cores in the linen closet and took them to the kitchen to dispose of them.  While in the kitchen I noticed the the garbage had been emptied from the time I went to bed to the time I got up.  Curiosity killed the cat and I am at least that curious so I began looking for things that were out of place or unusual.  There was an empty plastic bottle in an unusual place so I opened the cupboards in hesitant expectation.  I was right, it is Christmas every day with Ma.  I then opened the cupboard under the sink and found a collection of plastic containers that food was packaged in, cellophane bags from cereal boxes, plastic bottles  and empty food boxes neatly arranged like a shrine to the cockroach gods.  Containers sifted from the garbage pail to save them for some higher purpose.  We don't have cockroaches, but they will be well fed when Ma convinces them to move in.  I am really through trying to find reasonable (or unreasonable) logic behind my regular discoveries as it just defies explanation and understanding.  Crazy is Crazy!!!  Trying to find palatable reasons for insanity will drive you insane.  At that point you go from being Ringmaster to being one of the acts.

     I am going away this weekend and I just want some peace of mind.  My brother and daughter are going to look in on Ma and I hope she doesn't think they are the little man who has been sitting at our kitchen table.  The thought of Ma chasing them down the hall with a shoe is hilariously tragic.  Who knows what I will find when I return.

Take Your Medicine Like A Good Girl.

It has been relatively calm for the last three days since I started giving Ma cough medicine with codeine. She is quiet at night and doesn't seem to wander as much. She is sleeping better and has more energy during the day. I wish I could get this stuff in six packs.

I spend some time every day going over Ma's meds and making sure she takes them. She is resistant, and unless I put them right in her hand and watch her take them I can't be sure they don't go down the drain. She complained tonight as I insisted she take her cough medicine. She said it makes her sleepy. I want to tell her that is one of the side benefits of the medicine, for ME!!!

The TV dance goes on and I am constantly parading in and out of her room turning it down and resetting the controls she has compromised with her nonsensical surfing. It is really irritating to do the same thing every day. I am ready to take away her TV privileges as she did to me when I misbehaved as a child. This would be a great chance to get even if I didn't feel so bad about it.

I am going away this weekend and my brother is going to monitor Ma's medicine intake. I will put it out in single doses on the table in clearly marked envelopes (LARGE PRINT) and tell her to leave them where they are. My brother need only check to see that the envelopes are used in order. Hopefully Ma doesn't barricade the door so he can't get in.

I need to get away from the daily grind of being Cinderfella.  I am going away with friends this week, but I am going to find a place to be alone for a while so I can recharge myself.  I am getting unnerved by the never ending circus which is my fate while on the job as a shanty elder care provider.

Guilt and Gratitude Do Mix

Ma has been awful quiet lately. She has been sick for a couple of months. We've been to the doctors and she is on antibiotics and cough medicine. The cough medicine puts her to sleep and I must confess I look forward to her dosage every 8 hours. I feel kinda guilty about that but am really grateful that she isn't coughing. Another side benefit is that her late night delusional rants have stopped.

My Cinderfella existence has not changed. Every week I bleach tea stains out of the sink and off the cupboards. I wash the floor, so the laundry, run the vacuum,clean the bathroom, and insure that the household supply of TP is sufficient. I haven't seen evidence that my brother and sister have been here since Mother's Day. That is really disconcerting as Ma has certainly earned at least a biweekly visit. I am going away next weekend and am trying to get them to look in on her to insure she takes her medicine. No one has answered my e-mails yet. I really don't want to be worried about her every moment I am gone and I hope someone responds soon.

Bippety Boppety Boo

Brought groceries home tonight and let Ma put them away. When you live in a delusional world things don't go where you would expect them to go. Frozen food goes under the sink, TP goes in the coat closet, and butter goes in the cupboard. A little game of hide and seek to keep me on my toes. Well she felt useful and now she can sleep through the night. Of course I had to find the solution to the puzzle and place things more appropriately.

Their Everywhere, Their Everywhere

It is 3:45AM and I was awakened from a sound sleep by a pounding on the walls. I woke up with a start and went to Ma's room to find her swatting imaginary bugs off the walls with her slipper. When I turned on the light they disappeared. Thank God Ma keeps her slippers handy to dispatch the pesky varmints. This is the first time we had visitors that required chasing off in a long time. Kind of missed them. Things have been weird lately as Ma plods haphazardly towards the promised land. Her decline is accelerating and I find myself apprehensive every time I leave the house or return. If she is sleeping I wait to see her breathe, when she is not where I think she should be I seek her out. It is a funny feeling, kind of a hole in the pit of your stomach that never quite goes away.

I have to take Ma to the doctor later today and I am not quite sure what he'll find. She is laboring to breathe and coughing much of the time. The delusions are obviously real to her and I suspect?/fear? she could end up in the hospital. This would put me in a position of having to decide if she should go into a nursing home. This is already a source of conflict between my brother and I as I had her committed 30 years ago when she had paranoid delusions and he hasn't quite forgiven me for that. It needed to be done then and it may need to be done now. I suspect that it will put a severe crack in our relationship, an obviously irreparable crack. If he held on to the emotions surrounding the first commitment for 30 years, this one should last till the grave. Why is it that I am always where the rubber meets the road? The one who gets to do all the dirty work and put up with the recrimination that comes with it. It is a lonely place. Right or wrong you lose. He is emotionally unable to participate in her care or her placement in a home and that leaves me to do the dirty work again. I resent it and embrace it at the same time.

This is a difficult time for me as my Father passed last year and this weekend is the anniversary of my first visit to his grave site at the National Veteran's Cemetery in Bath, NY. I have decided to go back to have a chat with Dad on Sunday to help me sort through this most perplexing time in my life. It is a most solemn and reverent place and I really need to be near the one I am most like. My Father and I were two irreverent peas in a pod. Sarcastic Irish wits with a jaundiced world view that leaves no circumstance exempt from a dark verbal interpretation that minimizes the seriousness of life. I really feel alone in the world without him here. No one with the ability to interpret life in the unique way that only skeptics can appreciate. I remember when I came home from a two day bender with a tattoo I was unaware of. He noticed it while eating breakfast and asked me what stupid pill I had taken that would lead me to mark my body so I would have identifying marks. The way he put it was that I would never amount to anything and now I could not even rob banks because I could be identified by the tattoo. A Father's love for his first born can be a very strange thing. I really need a strong support figure as I deal with Ma's decline and my Brother's ambivalence about the things that need to be done.

I fear that I won't know what to do with myself when I don't have anyone to take care of. No madness to interpret, no imaginary varmints to run off in the dark, no toilet paper to buy. What will I do? Who will I become? My identity has been so involved in the care of my Parent's that I have forgotten what not having to take care of someone is like. I look forward to it and dread it at the same time. It has added a dimension to my life that is indescribable, a sense of value and worthiness that has been lacking since my children grew up. I guess I am afraid of not being of real value to someone I care about. It certainly appears to be a lonely place.

It's A Mad, Mad World For A Caregiver.

I came home today with the intent of taking a nap so I could go out later. Walking through the door the volume from the TV was louder than a drop forge in a steel mill. I turned the volume down over Ma's protests and as soon as I left the room she locked the door from the inside and turned the volume back up. This is kind of a regular occurrence and it usually goes no further. This time Ma opened the door to participate in her most favorite pastime, wasting TP, and when she returned she discovered that she had locked herself out of her room. She stood there quite some time trying all the keys in her possession, not realizing that there is no lock set on this door. I observed her confusion and started the process of breaking into the room. Every time I walked away to try a different tool, she went back to trying to fit her keys into the nonexistent keyhole. I finally got into the room by using my health insurance card and destroying it in the process. I hope I don't need it for anything. I then got a new hand set and proceeded to insure this never happens again by putting the locking mechanism on the outside. Now instead of locking me out I can lock her in. I doubt that this will solve the volume problem.

I am just having another one of those days when everything irritates me. I need to clean the bathroom, bleach the kitchen sinks, wash the floors, rewash the dishes that Ma has cleaned, and get ready to meet my pals in 2 hours. I am Ma's Cinderfella and tonight I am sneaking off to the ball. Sometimes it is more aggravating than others. First I have to throw away her TP empty tube collection and the new twist of saving the little portion cups from the applesauce I get for her. I have found at least 100 of them stashed away recently. What she is saving them for I may never know, but she needs to start it over as I tossed the first collection.

You Can't Put 10 Pounds of Sh** In A 5 Pound Bag.

I lost my temper yesterday. The problem is, the things you do daily that are aberrant and explained away by the elder's declining capacity, build up over a period of time until the smallest task is enough to push you over the edge. Yesterday, I gave Ma a card, flower's, checked the TP, bleached the tea stains out of the sinks, cleaned the toilet, washed the floors, took out the garbage, did the laundry and laid out doses of her medications. I do these things regularly but yesterday the stars just didn't align. She was actually rather upbeat and for the first time in years she decided to cook. We have no oven because she is not cognizant enough to turn it off in a timely fashion and it jeopardizes her well being.

Ma went into the kitchen without a word of warning and began preparing pasta in the microwave. She overfilled the container's and overcooked the noodles with too little water until a brick of mush was all that remained. I stopped her when she was putting the gelatinous mess in the microwave for the fifth time. She was hurt because she was trying to be helpful. The trouble is her helpfulness always equates to more work for me. When i stopped her she started crying which angered me as she was complaining about me being so controlling. Where is the line between controlling and protecting drawn? She stormed off, locked herself in her room and turned up the volume on the TV to a painful level.

I believe I am at the end of the line with my patience. I am a good son that is running out of gas. I need a break from my duties as shanty caregiver. I need a break from the worry and guilt associated with raising an elder. A break from being Vice President of TP. A break from delusional ranting and bathroom invasions. A break from rewashing the dishes Ma cleans and puts away. A break from tea stains on everything. In the words of Lilly Von Schtup in "Blazing Saddles", "Let's face it, I'm pooped."

Mother's Day Eve

This is an unusual time. Ma is declining and the delusions are more real to her. She chased off a delusional intruder last week and insisted I change the locks, so on Thursday night I asked her for her key so I could change the lock. I then put it in an envelope and wrote on the envelope that it was a new key for the new lock. She just had to think that the door locks were changed to feel safe. Life has become a series of little white lies and outright fabrications to deal with delusional perceptions and Ma's insecurities. I seriously hope that her dementia isn't hereditary.

Ma's time is getting short and she is sleeping a lot. She is tormented by ghosts from her past in her sleep and the loss of her daughter in her waking hours. She has become so depressed that she isn't eating ice cream which is not a good sign. Here it is the eve of Mother's day and I am not even sure if she know what day it is. I have a card for her and tomorrow morning I'll get some fresh flowers. Her greatest accomplishment was her commitment to motherhood. She gave up her life for her kid's and, quite frankly, she deserves a better fate than waiting for the Grim Reaper in a delusional funk. A life of quiet desperation is a cruel end to a difficult life.

Aparition Is Run Off By Shanty Elder

Saturday is my day. I have breakfast with the boys and pretty much do whatever I damn well please. Today was no exception. I left the house at 9:30 AM and returned home at 6:30 PM. Ma announced that she had run off an intruder that was sitting at the kitchen table when she got up. I gotta tell you I don't know what to believe. I personally think her night time terrors have become daytime delusions. She claims that a little white man was sitting at the table and she chased him off by hitting him in the head with a shoe, I don't really see it. She insists that I change the locks. Change the locks so the boogeyman can't get back in? She chased off someone in the last 80 years, I just don't think it was today.

Things Just Ain't So Funny Right Now

Disturbing things go on everyday but I seem blissfully unaffected. I don't know if unaffected is the right word, ambivalent?, depressed?, concerned?. Mom is certainly declining and that seems to make me less passionate about her idiosyncrasies. I still buy more toilet paper than some 3rd world nations, I still have to force feed her medications, I still bleach tea stains out of the sink, I still play volume police with the TV, but I don't seem to be experiencing these things as emotionally these days. I think the inevitability of her moving on is weighing heavily on me.

Ma is sleeping a lot. She is run down and disinterested in living. She goes through the motions of cleaning and dressing every day but lacks any real energy. Her breathing is labored and her night terrors are pronounced. It is hard to get angry when she is in such difficulty. I have found myself contemplating her frustration and sense of inadequacy as she is unable to do anything that is complicated or requires concentration. It can't be pleasant to be that dependent on someone for your simplest needs.

I believe I will come home some day soon and she will have moved on. I check her every day when I come through the door. Is she still breathing? Is there evidence that she has been up and about? Are there new tea stains in the sink? Has the newspaper been read? Ma needs to move on. To escape this frustrating prison which has become her life. Will I really be prepared for the final chapter in my own life when there are no more shanty elders for me to take care of.

ALL'S QUIET ON THE EASTERN FRONT.

It has been pretty quiet lately, well if you don't count the TV volume at 60. Ma is quite quiet lately. She has been sleeping a lot and other than a few arguments over the volume it has been relatively uneventful. Oh, she still uses an ungodly amount of TP and stains the sink with tea daily, but I am used to that.

You Keep A Knockin But You Can't Come In...

I stayed away last evening to take care of a friends home and cat. I laid out all of Ma's meds in clearly marked envelopes with a magic marker. I left his house early in the morning and headed home to shower and go to breakfast with my friends. When I arrived at my apartment I couldn't get in, Ma had put the chain lock on the door. There is a dead bolt and a handset lock that were also locked but I have a key for those. To say I was angry would be an understatement. I banged on the door knowing that Ma couldn't hear it and my angst boiled with every futile knock. I resisted the urge to kick the door in and I was running late for my plans with my friends, so I left. I plotted my course for when I returned. I took a pair of needle nose pliers from my car and was prepared to break in to the apartment. When I reached the door the chain lock had been unlatched and this perplexed me again. There is no rhyme or reason to put that latch on the door. There is a more than adequate dead bolt to keep the crazies out, or in this case to keep the crazies in. I have learned not to expect logic in fantasy land so I didn't bother to question why she though it necessary to put the fragile chain latch on the door in addition to the other locks. The truth is it would be so easy to break that latch with very little force. The only one that it would keep out is a shanty caregiver who would be required to repair any damage to the door if he kicked it in.

Later, I went out and returned to find the door latched again but Ma was right there and opened the door for me. I told her to never use the latch again and took a nap. I slept most of the afternoon and evening as I wasn't feeling well and when I awoke I found the latch attached again. I immediately removed the chain to insure my future access. I now wonder what delusional boogeyman Ma has fabricated to create this paranoid need to latch the door. I need to really remind myself that there is no logic in fantasy land.

Whenever their is an incident like this I become hypersensitive to the other idiosyncrasies which haunt my everyday life. The tea stains in the sink, the TP use, the bowls of cereal milk in the refrigerator covered with another bowl instead of cling wrap, the unused adult diapers, the hand washed underwear in the bathroom, the volume on the TV, the failure to take medicines properly and the nonsensical repetitive discussions about something kind said to her in 1957. I am certainly running out of patience. The life of a shanty caregiver is certainly difficult and is a challenge to grow up and view their elder charge objectively.

Pure Softness!

The logic of elders confuses me. I know that every seeming oddity has some connection to a past reality but I often just don't get it. TP use is just the tip of the iceberg. Ma refuses to use the adult undergarment protectors I purchased, but has no problem using Top's "Pure Softness" fabric softener sheets to blow her nose or take care of some other hygienic necessity. Well it is my own fault as I only brought home 6 rolls of TP and they have a very diminished appearance in a closet usually filled with 30 rolls.

There is so much I don't understand. Why would you cover a dish of uneaten food with a paper towel when plastic wrap is within reach? Why would you save the milk from your morning cereal when there is a gallon of milk on the shelf above it? Why would you hide empty boxes in the coat closet instead of putting them out for me to get rid of? Why do you save cellophane bags in the deepest reaches of the cupboards instead of in the garbage? Why would you wipe your a** with fabric softener sheets when there are 6 rolls of TP in their usual spot?

I fear that Ma is quickly approaching the promised land or the laughing academy. It is a question of if her life force is diminishing faster than my patience. At this point it is a toss up. I wonder what kind of decisions she is making when I am not here to ameliorate the outcomes. I become more concerned with each passing day. She has COPD and it is really getting bad. She won't use the inhalers and insists that she has a cold. She has been telling me for the last month that the first two days of a cold are the toughest and she will be alright tomorrow. I don't believe her. If I can't get her to use the inhalers I believe she will end up in the hospital. It is difficult to get an elder to do what they don't understand or want to do. There is a time when you must be more concerned about their well being than whether they like you or not. I am quickly approaching that decision.

The Busiest Room In The House.

There is a code observed by most civilized societies that closed doors mean stay out. I learned this from my Mother who seems to have forgotten the lessons she gave. This weekend has been a parade of embarrassing encounters around the necessary room. On Saturday Ma entered while I was showering. This started the bathroom invasion. Why Ma has stopped observing the closed door knocking etiquette mystifies me. I have had to start locking the door. There have been one-half dozen incursions while I have been in some embarrassing state of personal vulnerability. The knocks on the locked door have become irritating as my privacy is compromised. One time is a mistake, two times an annoyance, but six times is an invasion. I can understand why Ma feels this is her own private space as she spent enough time in there in the last 10 days to use 28 rolls of TP. 28,000 sheets of single ply comfort is a hard habit to break. I am afraid that if I bought Charmin ultra soft the bathroom would be forever lost to me. The idea of taking Navy baths in the kitchen sink and driving around at night looking for a filling station to take care of my own personal needs leaves me a little cold.

Ma Must Be Dealing TP On The Black Market

If little Johnny buys 30 rolls of TP on Thursday and on following Tuesday there are nine rolls left, how many times has Ma made a trip to the linen closet to retrieve one roll??? Give up? 21 trips, an average of 3 1/2 times a day. She has got to be selling the stuff. There are a lot of seniors in the area and I wonder if she sets up a stand out front when I leave. If she was actually using that much TP she needs to be in a hospital, she would have to be dehydrated. I really suspect she is hiding it in her luggage or giving it to my sister. When she passes I will probably find a stash in some unexpected place.

My Father took care of his Ma as I do mine. When she passed we had to clean out her apartment and it was quite a comedy act. My Father, Brother and I had the same sense of humor. An irreverent interpretation of seemingly tragic events that leaves more civil onlookers aghast. My Brother and I carry on as Dad has taken his act to the "Big Stage". Grandma was a real "Lace Curtain Irish" maven with a tongue as sharp as a razor. She made no excuses for the things that she said. She was the Queen Mother of the backhanded compliment. She made intolerant people seem nice. So cleaning out her personal belongings was particularly insightful into her personality. She had food of all kinds in large glass jars hidden throughout the house. She had a little bit of folding money in every coat and taped to the bottom of drawers. We really never understood her fear of not having enough to eat until then. We found all kinds of treasures hidden from prying eyes in her small apartment and we joked about every discovery.

I would suspect I will find some of Ma's treasures when I clean up after her lift off to the next dimension. I wonder if I will find a cache of TP. I may end up with a lifetime supply of TP. I can hear my late Father's voice in my mind's eye and know he would be cracking on Ma's obsessive hording of TP with his big blue eyes rolling in his head. He would have to ask just how her poor derriere held up to all the friction from that much wiping. Life is certainly too short to take it too seriously. In the words of my Father, "You better laugh, or you'll be the next one on the bus to the laughing academy".

Shopping Day Equals Irish Guilt

Every time I go shopping I feel pangs of guilt because I refuse to take my Mother shopping. It certainly was one of her favorite things and one of my most frustrating experiences. It was extremely difficult to watch her as she aimlessly meandering through the aisles lost and confused with little or nothing in her cart. She heard little and was occasionally frightened by persons blazing through the aisles like a NASCAR event. It was particularly disconcerting to find her communing with the avocados for 45 minutes. She reacted angrily when you questioned or if you tried to move her along. Shopping is a get in, get out deal for me and anything that gets in the way of that is discombobulating. It doesn't change the fact that I feel like I am depriving her of a chance to get out of the house. I just can't/won't do it anymore. The guilt persists.

Today was a major shopping day and I struggle to find things that Ma can prepare in the microwave or eat without preparation. This week I got cereal, individual cups of applesauce, bow tie pasta, sauce, apple juice, broccoli steamers, pizzas, precooked cheeseburgers, tea bags, toilet paper (a 30 roll stash), and the only things she really cares about, ice cream and danish. I put away $200 in groceries with Ma standing in the bathroom oblivious that I had returned. At least she had her clothes on.

I have been struggling with what to do about Ma's incontinence. It embarrasses her and it is frustrating for me to come up with a solution that is not demeaning to her. A friend suggested a pad and when I first spoke to Ma about them she became angry. Today was my Waterloo as I brought home 120 of these accident guards and asked Ma if she new what they were for. I then told her she must start using them, I felt like a parent chiding there child about wetting the bed. I really don't like times like these. Times when our rolls reverse and she becomes child and I become parent. I can't imagine it is any easier for her, probably harder.

I went on a cleaning spree this weekend with the nice weather (60 to 70 degrees). I opened all the windows to get the stale winter smell out, used carpet sanitizer, bleached the tea stains from the sink and rearranged the furniture. Since then Ma has come in the front room at least 20 times to make the same pronouncement that she likes the way things were placed. She uses the same tone like she is seeing it for the first time. I do wish I had a little more patience with these things as I find the endless prattle uncomfortable. I would welcome some private time with an engaging adult to wax philosophic about nothing in particular while solving the problems of the world. The one rule of engagement would be that you can't say the same thing twice and if you err you get your head dunked in the necessary bowl, the one that flushes.

There Are Just Some Things You Don't Need To Know

Ma has been giving away her prized possessions. Last week she gave one of my daughters a prized charm bracelet. She is constantly rummaging through her little boxes and containers checking on her treasures. I believe she is preparing herself to move on.

Today my daughter came over to pick up a Nordic Trac, it was a great idea to replace the hall coat closet. It became apparent that no one was going to use it for it's intended purpose so my baby girl claimed it. In the course of moving it outside Ma beckoned her to a private conversation where she showed her some lingerie from the 60's and gave them to her. Additionally, she offered some insights on when and where to use it. She graphically described things my father enjoyed and suggested these were things she should consider. My daughter was mortified, she is claiming that her experience was far more embarrassing than my 10 second viewing of Lady Godiva. At least I didn't have to talk to Ma about that experience. As my daughter left the apartment Ma gave her one of those knowing looks exchanged between parties to a secret. I can only imagine her discomfort.

I wonder how many embarrassing experiences are to be had as Ma moves closer to the Promised Land. I know I have seen just about everything I can handle.

IT'S THE LITTLE THINGS THAT DRIVE YOU NUTS

There was a timid knock at the door, before looking I knew who it was. Ma had locked herself out while taking out the garbage. Sure enough, there she stood with the emptied disposable kitchen garbage bag. The 332 conversations we have had concerning the fact that you are not allowed to dump garbage down the chute unless it is in a bag fall on deaf ears (Ma is deaf but multiple letters have been written to her about this). I bought 250 disposable bags this month and if we used two of them I would be shocked.

Today is cooking day. I usually prepare a large portion of something for Ma to sustain herself all week. Today it is chili and I used up all the pyrex containers cooking hamburger and making spaghetti, sauce and noodles for tonight's dinner. In self defense I hurry to do the dishes because I hate having to clean off dried food after Ma has rinsed them and put them away dirty. I should have dried them and put them away also as listening to Ma slam them into the cupboard also drives me to distraction. I usually buy everything in bulk and I had purchased four pounds of spreadable butter in tubs last month. Every one of them has been partially used and has some other foodstuff in the container. One of my neurotic aversions is mixing food, I use two knives to make a peanut butter and jelly sandwich as finding jelly in the pb or pb in the jelly is repulsive to me, so, I need to buy more butter or do without. I am going to have to hide stuff better. Well, the chili is on and needs to cook several more hours. The noodles and sauce I prepared for Ma sit uneaten, but the uncooked chili has been raided prematurely.

Ma is sitting watching TV as I write. She called to me complaining that it wouldn't go on, I find it unplugged again. It appears that the remote batteries need to be replaced and using the button controls on the front of the set is beyond Ma's comprehension. Remembering that she unplugged the set is also an unreasonable expectation. There is an upside to this story as Ma's volume finger has been disabled with the loss of the remote. No need for the volume police tonight.

Ma is experiencing night terrors again. I sleep on the couch by the door so she doesn't wander off and she has awaken me 3-4 times a night yelling at some unseen tormentor, "Get out of here." This really worries me and if it continues I will have to do something to make her secure.

MY EYES!!!!! MY EYES!!!!!!

Well, my worst fear has been realized. I have found a hobo frozen in a boxcar, seen people shot, stabbed, impaled and had an employee snap his leg in half while working for me. Nothing could have prepared me for today's nightmare.

I went to breakfast with friends and spent some time with them afterward. It was fun as we busted each other's chops for all kinds of social shortcomings. I believe we solved all the problems of the world from Obamacare to the the loftiness of the Spot Coffee on Main St. in Williamsville. No topic is safe with this band of miscreants and malcontents. I felt particularly uplifted by the banter. I left and did some shopping and went home feeling impervious to the ills of the world. I opened the door and was stopped in my tracks dropping the milk and shrieking to Ma to close the bathroom door.

I didn't know Ma made like Lady Godiva when I wasn't expected. I viewed first hand where all the TP was being used. I was deeply shaken, NO MAN SHOULD EVER HAVE TO VIEW HIS MOTHER'S UNCLAD BIRTHDAY SUIT! When my Father was expiring and getting weak, he fell into the tub and I had to pick him up, pull up his pants and put away his ducket. The family jewels were something I had never intended to view, let alone put away for him. There was a certain pride that we were men who did not have to whistle and look away at a public urinal, but I could have happily lived a lifetime without that experience. Now Ma parading around in the altogether is way, way over the line. I have always had a fear that Ma would expire in the tub and I would have to drain the water and cover her up. I have come to know that I was right, it is a really disconcerting experience to see, even briefly, Ma in the altogether. I hope she doesn't want to talk about it as I am sure she is as embarrassed as I am. This has got to be some kind of cosmic joke. My greatest fear realized just when I thought I was on top of my game.

I have been pretty content lately, feeling that I had ..... Hold that thought, I have to go turn the TV down to a level that will allow me to think. ... turned a corner with my acceptance of Ma's eccentricities. I am glad that life offers continual educational opportunities to expand my horizons and be humbled by my experiences.

I would have never chosen the path I am on. I have always envisioned this portion of my life as a full time Mardi Gras. A time to be enjoyed with little or no responsibility. This is more difficult and frustrating than raising a brood of kids. I can only imagine that my parents were and are as frustrated by the loss of their independence and dignity as I am. My mom wished me a Happy Birthday today, 12 days late, and was genuinely hurt that she didn't remember me on that day. She is way to busy preparing for her next life experience to have to worry about such things.

HOCKEY TONIGHT

Every time I watch a hockey game I think of my Dad. The last months of his life were spent with me in front of the TV on nights when there was a hockey game. I miss those times. I hope the Sabres play better than they did the night Dad passed.

Ma's recent behavior gives me pause. She is not really interested in much other than TV, bologna sandwiches, cereal and eating ice cream. Ma must think we are back in the Great Depression as she is saving milk from her morning Cheerios in the refrigerator. Well it is certainly better than when she was stuck in the 50's, a lot less delusional rambling. I try not to call these things to her attention as she embarrasses easily when questioned. I don't believe she knows why she does these things. She is still hyper vigilant about locking the door. Last night she checked the locks when I came in and again unlocked the doors assuming she was locking them. This morning she left a note asking me to lock the door when I left, something I do every day without being asked. These notes are becoming more frequent and I wonder what is motivating her concern. Is someone tormenting her when I am not here? Or is it just a natural paranoia that goes with her dementia? I really don't know, but I lean towards delusional paranoia.

Everything is really quite normal (?) at this time. Ma has eaten two pounds of bologna, two half gallons of butter pecan ice cream, left seven bowls of used cereal milk in the refrigerator, and used 7000 sheets of TP in the last 5 days. It is amazing what you get used to as you care for your parents. It is like when your kid's finally make you brain dead as they grow up and you figure that if they aren't killing each other then how bad can it be (?). You reach that place with your elder that if they remain clothed and don't dance the Lambada in the courtyard, things are ok.

Another Day in Elderville.

Thank God for friends who help you look at things from an entirely different angle. I was riding with friends to an early morning engagement when I started whining about Ma forgetting my birthday. A dear friend pointed out to me that she had been trying to forget the day I was born for 57 years unsuccessfully and had finally accomplished this after 58 years. Hard to argue with that kind of logic.

The truth is Ma is diminishing. She is mired in the recent loss of my sister and father. Her logic is spotty at best and she is in a transition to the next plane. She has lost the will to live. She sits with her shoulders slouched and her face is haggard. She talks to my father and sister constantly when she thinks I can't hear. The fat lady is warming up to sing Ma's song.

I am not sure exactly how I feel about the inevitability of Ma's moving on. I would like for her to pass peacefully in her sleep but don't want to be the one to discover her, but there really is no one else. I feel very strongly about my Mother's dignity, I don't want to find her in some state of disrepair or in an undignified position. I can't think of anything more undignified than being in the necessary room at the time you get called to move on. I have seen some horrific things in my lifetime and was not as deeply affected by them as I think I will be at my Mother's final time. She has given so much purpose to my life, given me an identity as a "good son", I wonder what purpose I will find after that time. Of what purpose will I be when my job is done? Will I find another to care for? How will I define myself in my minds eye?

I am really confused about who I will become when I don't have the protection of my identity as Ma's caregiver to shield me from the world. She is my job, my sense of self, my excuse for not living fully. Her care gives me an escape from every difficult social situation, every invitation that would require commitment to some emotionally demanding liaison. She has been, as always, my greatest defense against emotional involvement. It is time for me to move on with my own life.

The More Things Change, The More They Stay The Same.

Took a little inventory on Wednesday of items in the house in anticipation of going shopping. 6000 sheets of single ply TP and two 1/2 gallons of ice cream in the house. Friday morning, 1000 sheets of TP and no ice cream. How could anyone use that much TP and eat that much ice cream??????? I am always caught up short when I review how much TP Ma uses in any one week. Assuming the average old person goes to the necessary room 3 x a day and uses 30 sheets at any one "sitting", 5000 sheets, the amount of TP now gone and assumed used, Ma should have been good for at least 400 trips to the necessary room with a 500 sheet buffer. Yet, I had to hot foot it to the local store and get an additional 4000 sheets to hold her over until I get to the store. Thank God the store I do most of my shopping in has packages of 30,000 sheets or my life would consist of running to the store 3 times a week for the precious commodity.

Ma has a lot of physical problems in addition to dementia. High blood pressure, hardening of the arteries, diverticulitis, and COPD. She is not supposed to eat a lot of dairy. Ma loves ice cream, and if it makes her happy I will provide her with that treat regardless of what the Doctor's say. I wonder if ice cream has ever been sighted as a cause of death on a coroners report? I wonder if I can be arrested for elder abuse for getting Ma her "fix". I can see the headlines now "Shanty Eldercare" provider given 3 years for assault with butter pecan. Ma's eyes lit up and she jumped out of a chair to greet her supplier when I got home. She wasn't hungry but managed two trips to the freezer for dishes of ice cream. This is worse than raising kids, you can yell at your kids. You can yell at Ma too, but she won't hear you and she really doesn't care to hear you caution her about her precious frozen delight. I just keep an eye open for the police for when Ma blows me in.

A Lock, A Lock, My Kingdom for a Lock!

My Mother forgot my birthday. Five days have passed and not a single word about her and my special day. She has been with me from the start and her failure to acknowledge the day brings two thoughts to mind: She is angry with me for some unreported infraction against her or she really hasn't got a clue. I could probably deal with her being angry, but have trouble digesting that she really may not know. The people at work had a surprise birthday cake and celebration for me, I really thought I had evaded that acknowledgment, and I brought home birthday cake with salutations on the frosting but it didn't jog her memory. She was happy that she could now feed her sweet tooth, but her memory of my day never came up. I cannot comprehend emotionally that she would forget our day, but I must confess that I certainly believe it is true. Kinda feels inexplicably lonely to think your life is of such inconsequential importance to the second most involved person in your being. Thank God I can intellectually accept her inability to grasp current events due to increasing dementia which minimizes my hurt.

Her sister's husband passed last year on March the 16th, the day before my Father's passing. Out of respect, and an attempt to get Ma involved with something, I initiated a phone call to my Aunt and put Ma on the phone. We spent hundreds of dollars on this phone which has a digital screen so you can read what the other person is saying, Ma insists on trying to hear the other person. She spends 15-20 minutes of every phone call switching ears, turning the hearing aid on and off before finally succumbing to reading the infernal screen. Then the delusional ramblings begin about my Father, my Sister, my Cousin who had a serious brain injury at Christmas last year. The conversation is predictable as she says the same things over and over again. My Aunt is frustrated by my Mother's ramblings and eventually hangs up and Ma continues to talk until at some point she realizes she is talking to herself and then goes to her room to cry.

I have begun to feel increasingly concerned over Ma's safety. She tried to check that the door was locked from outside the apartment and timidly knocked to get me to let her back in. The idea that you would check the door locking from the outside is kind of disturbing. She is getting up 2 - 3 times a night to check the locks, from the inside most of the time. I am questioning my ability to care for her much longer. I could not live with myself if I was negligently responsible for her being injured. I am not sure I can live with myself if I put her in a skilled nursing facility. I can't really win, damned if you do and damned if you don't.

IT'S BEEN A LONG YEAR.

I turned 58 yesterday (Sat 3/13). Last year I went out with friends, leaving my Brother to take care of Dad. I returned home around 1 AM and the process of Dad's final day's on this plane began. I have to confess I have been a little distracted the last two weeks in anticipation of the first anniversary of Dad's passing on St. Patrick's Day. I haven't felt like writing and I have been very intolerant of other people. The blessings of maturity have prevented me from saying too much, lest I hurt my friends and family with some unwarranted tirade. Thank God Ma is deaf.

I have always responded to emotional crisis by withdrawing and becoming hyper vigilant and self protecting. I react decisively and without regard for anyone else when so challenged. I don't like to be comforted during these times, I keep people at a distance, almost like I will fall apart if someone touches me. I see a lot of that in this time of introspection, I am someone who must work through these things alone, in my own way. Writing helps me as it is like a release into the ether's of otherwise unspeakable feelings and emotions.

My friend's father passed last week and the parallels of our lives and situations is uncanny. He took care of his dad for many years and the emptiness and sense that you have lost a piece of yourself seems to be universal. It is like you have lost your identity while gaining great insight into the inner complexities of your loved one. I was/am humbled by my father's faith, integrity and toughness as was my friend at his Dad's passing. I had the privilege of visiting his Dad a few weeks before his passing and had the same impression of him as of my own Dad. They really developed character in those WWII era personalities. Both men had character and were characters. They remained tough right to the end, no whining about being sick, no blaming God for the painful realities of a diseased body, no loss of that charmingly dark sense of humor that the Irish are noted for. They were men I admire. At times I wonder if I will go out whining like a newly acquired puppy on his first night alone or like these men. I have a lot of work to do to be like that. A lot of growing up to do.

Because of my own introspective discomfort I have become hyper sensitive to Ma's experience and her regular foibles. She is talking in her sleep to someone and is often disoriented. She has been crying a lot and I don't know how to comfort her other than to leave her alone. I have never been overly affectionate with Ma and I really don't understand her way of looking at things. I am more like my father, a prisoner of guarded emotional expression. The things I do regularly have become more difficult in these last weeks and some minor, almost undetectable level of self pity is just below the surface. I have to remind myself that I have the life I have chosen and just do the things I need to do to make her journey to her final reward as pleasant as possible. I must confess that I have a more than usual aversion to cleaning the toilet, bleaching the stains out of the sink, preparing food, and listening to Ma's disjointed logic and repetitive reminiscing about her life in the 1950's. I am truly frazzled. In this life I have taken many lonely journeys within my own consciousness and it never matters whether I am alone or with friends and loved ones, I scrutinize and evaluate myself in private. I believe I have been blessed (cursed?) with an objective ability to define who I am and to be accepting of all my personal eccentricities and shortcomings. I like that work eccentric, it is a nice way to say neurotic and flawed.

I am of that age where I, too, am getting short (running out of time) and wonder if I have done enough for others to have someone around to clean my toilet and listen to my disjointed ramblings. I hope to be blissfully unaware of my limitations and surroundings when that time comes. These experiences with my parents have become the fabric of my life. There hasn't been enough time to really involve myself in my own life and I hope not to regret that as the years pass.

Latchkey Elders

Ma began an obsession with locked doors a couple of years ago. She likes to feel safe, but the mechanics of the dead bolt, hand set and chain are out of her skill set. She is as likely to unlock a door if she is convinced it is not properly secure as she is to lock it. It is a 50/50 proposition. She has, in the past, barricaded the doors to her home with furniture. She has become hypersensitive to her personal security. Today, I lost my house keys. I left them in the mailbox. A kind neighbor took the keys and attempted to return them to me at my apartment. Ma was the only one home. She turned the Good Samaritan away in a less than polite manner. She is convinced that someone was attempting to scam her. Who knows what she thought she heard as she peeked through the peep hole and saw the woman with the keys. Hopefully she was not too insulting or vulgar. Yea, Ma now regularly uses vulgarity when she feels threatened. The words, I would never use myself, flow from her lips like a sailor that has been at sea for a year and has learned he won't be allowed a Liberty when port is reached. I wasn't aware that she even knew the words she uses. For Ma's security I have her keys on a fluorescent floating device with a license plate with her first name, apartment building, and my phone number on it. Maybe I should have gotten one for myself.

Kitchen Etiquette 101

The kitchen is the most used room in the house. Food and utensils are stored, prepared, and cleaned in the area. This presents some unique challenges for the Shanty caregiver. When one doesn't have the use of a stove, having been disconnected to assure the elders safety, preparation can be a challenge. All things must be prepared in the microwave or crock pot, different utensils and food types are required. There seems to be more waste byproducts when you prepare food this way and sanitation is an issue.

When using the crock pot to make a stew, chili or a roast you can usually leave the offering in the pot all day and go about your business secure in the knowledge that it should be cooked adequately after you return home. Unless..., Ma, who has become unusually afraid of electric appliances, unplugs the the concoction at some indeterminable place in the cooking process. Then a guessing game occurs as to how much time remains to cook and when it will be of an edible quality. If I am very lucky she has not put the crock pot, still hot, into the refrigerator with the plug still attached melting the plastic coating on the refrigerator shelves and making the plug wet in an attempt to electrocute her unsuspecting caregiver. I have taken to cooking in the crock pot at night when I am sleeping on the couch to keep Ma from taking a late night walk during some delusional nightmare. I now multitask while sleeping by blocking access to the door and cooking at the same time. Sometimes my inventiveness even impresses me.

Cooking in the microwave requires constant checking and often interferes with Ma reheating her tea. No problem, whatever is being cooked can be removed in mid processing and be replaced with a mug of tea temporarily soothing Ma's insatiable thirst. Besides, Ma can't set the timer properly and to find the device with time actually running on it is a real treat. Just set whatever is in the Microwave to the side, reheat the brew, and walk away leaving the previously cooking item in some unrelated location like on a chair or in a cabinet. It has become a game not unlike hide and seek or blind man's bluff. How much time elapsed before the interruption? How much time passed during the interruption? And my personal favorite, where the hell is the food?

Clean up is a real treat. The hair on the back of my neck stands up as I hear Ma rattling dishes, pyrex bowls or glasses in the sink. In self defense I try to clean as I go but I often want to rest and digest my food before cleanup. Ma has a sixth sense about this and she bee lines to the sink while I am distracted where she pretends to clean the dishes. She rinses them, dries them and slams the glass wear into the cupboards and the utensils into the drawer. More often than not a glass breaks or a dish cracks and they are put in the cupboard anyway. Thank God they probably still have some food on them which acts as a glue holding them together till her caregiver reluctantly removes them from their resting place to give them a proper cleansing, If not broken. I would like to have stock in Buffalo China or Pyrex as I am sure their stock has increased in value since Ma has aged.

Leftovers are a challenge as Ma doesn't seem to believe in wrapping paper. Various unidentified items are often found in the refrigerator, uncovered or in bowls with dishes covering the top, or covered with paper plates. The only thing you can count on is that she did not use the clear wrap that is in plain sight on the counter top.

Trash removal is another issue. Empty cans and other containers are found in some unusual hiding places, sometimes rinsed, sometimes not. Hidden in the back of cupboards, on the floor in the coat closet, on the window sill, or under the sink. One thing is certain, it is not where you would logically expect it to be. Just another way that Ma helps sharpen my deductive skills. I can tell when Ma has taken out the trash. 100% of the time the hinged cover is on the plastic container backwards. Where she is taking the trash I have yet to find out. I am not sure I want to know.

EPILOGUE TO ALRIGHT, OK

After 2 1/2 hours of the alright, ok, "Chinese Water Torture" I succumbed and went on a trek to find #13 hearing aid batteries. Lancaster, Cheektowaga, and finally West Seneca at Wegman's. You cannot imagine the relief I felt when I saw the lucky #13's hanging on the hook just waiting to be grabbed up. Is it Christmas again? I scurried home, my salvation in my pocket. Ma was in the kitchen, obviously worn out from her alright, ok experience, still with the non performing device in her ear. I handed her a new battery and she, thinking it was her medicine, started to put it in her mouth. I stopped her and had her remove the hearing aid and put the battery in the device myself to insure proper performance. As the all too familiar whistling sound pierced the air I knew peace was just around the corner. Four more rounds of alright, ok and the prattle stops as the confounding device is working again. I think I can safely say I will never forget to stock up on batteries again, especially since Ma has ordained them to be edible mints. I wonder how many she has consumed in the past? I guess I'll have to take her to the court building down the street and see if she sets off the metal detectors.

WELL ALRIGHT, OK, YOU WIN....

Alright, ok, alright, ok, alright, ok, alright, ok, alright, ok. This is one of the most frustrating things about Ma's hearing loss. She will go on for hours trying to find a old battery that works when she runs out. She will put in the wrong size then jam the the unit shut insuring that I must repair it or take it to be repaired. For some reason I hate handling it, kinda creepy, I do it anyway.

I didn't remember that I had run out of replacements for her and a trip to the pharmacy left me empty handed. I know they will have them tomorrow because I asked, but in the meantime she will spend the night putting the same old batteries in again, and again ,and again, and again, alright, ok, alright, ok. If she would change it to ok, alright for a little variety. Whatever happened to testing 1,2,3? I beg her to throw the old batteries away and she ignores me. She has a stash of the irritating non performers and she uses them to torture me so I never run out again. This is as bad as the "Chinese Water Torture". I don't really understand why someone would be so obsessed with making something work that obviously doesn't.

Gotta go now. The Volume Police have a disturbance call at the TV. It's time to start the evening dance card.

Insanity Television

Television viewing is Ma's only distraction now that the snow is flying and she can't take her daily walks. When I moved Ma out of her home I purchased her a flat screen TV with an output that would accept a headphone set. I figured that if I put the earphones on the TV it could play endlessly without driving the neighbors to distraction. It only created more work for me. Every day, without exception, Ma would complain about not being able to adjust the sound on the TV. At this point I would walk into the room take the earphones off the doorknob and hand them to her. She always acted like she had seen them for the first time. Then she had to be re-educated on how to adjust the sound and change the channel. Every day the same routine.

About one month ago Ma decided to carry a cup of tea (see The Buffalo Tea Party) into her room late at night in the dark. She fell and spilled tea everywhere which I cleaned up and I made sure she was alright before I went to bed. Sometime later she was complaining about not being able to turn on the TV. I found it unplugged and the cable had been removed. They just don't work so well without power. I plugged it in and fastened the cable and nothing. I move the set to look at the connections and I discovered the tea had been spilled into the back of the set. Another dead soldier. I put my TV in her room so she would have something to watch. My TV is as old as my mother. It has no outlet for earphones and it now marks the way for my new challenge. The volume. Once again I am the TV Volume Police.

My daily routine now includes monitoring the volume on Ma's TV. I walk in at night and the sound is max-ed out and Ma complains as I turn down the volume. I put on the closed captions despite her protests and she complains I am controlling her. She says "you might as well turn it off", I leave that for her. Sometimes she gets in a snit and turns it off and goes to bed. Other times she watches in silent scorn, stealthily increasing the volume till I come in and turn it down again. She renews her complaints and the cycle repeats. The truth is I think she sometimes does it to get me to engage her and other times she is just frustrated at the fact she is old and deaf.

Ma really can't figure anything out anymore. Not the simplest mechanical logic. It must be horribly frustrating and frightening for her. I left her watching TV in the living room the other day when I left for the weekend. I instructed her on turning off the large screen TV and returned to find everything unplugged. Cable box, computer, paper shredder, television, surround sound, dvd, and even my desk lamp. If you don't understand it, pull the plug. Pull all the plugs. I now know what I need to do with my tax return.

To Go Or Not To Go... That Is The Question.

I have commitments the next two weekends and I am having feelings of guilt about leaving Ma unsupervised that long. She has been really disoriented lately and has been skipping her medicines. It seems she starts to take them and gets distracted and forgets to come back for them. She really can't afford to do without her meds. More correctly, I really can't afford for her to be without her meds. When she isn't adequately medicated she gets more delusional. The invisible cat runs through the house, my sister's death becomes a bad dream, and she chat's freely with my deceased father. So helping her helps me. There is a level of detachment I have achieved when listening to Ma's ramblings that insures I won't go crazy myself. I just keep reminding myself that it isn't really purposeful, but after a while it gets frustrating and I need some disconnect time. So leave I will, hoping she doesn't wander or lock herself in the hall without her keys. I have asked family to check to be sure she takes her meds, I will lay out the medicine in envelopes for night and day and they will check to be sure the proper envelopes are empty at the proper times.

Shantycare, medicare and medicine.

I hesitate to get political but must speak out on health care in this country. It is a crime that a person spends their whole life contributing to the productivity and growth of our country and many have to decide on what medicines they can afford to take to insure the quality of their lives. Ma is fortunate as I am able to insure she can purchase what she needs, but my heart breaks at the thought of the childless unsupported elderly couples or singles who live in quiet desperation, fearing for their well being because they have to choose between eating or medicine. It is inconceivable that some able bodied persons qualify for full coverage medicaid benefits with $0 co-pays while the elderly who make a pittance on social security and have to pay for coverage that is inadequate because they don't meet the poverty guidelines. Ma's outlay for her monthly medicine co-pays is about $85 and she pays $65 taken directly from her social security check which amounts to $150 per month after she actually pays for her medicines. I am personally appalled by this.

It became evident that Ma had lost her ability to manage her health care. There were unfilled prescriptions hidden throughout the house, and an evening ritual of pulling out a plastic tub and rummaging through multiple prescription bottles, some current, some outdated and some unnecessary. What she was or was not taking was a mystery. I first had to make arrangements to meet with her doctor to determine what she was taking and why. I knew she was delusional and forgetful but didn't know why or what was being done for her. Ma had a diagnosis of vascular dementia. This is a hardening of the arteries to the brain and many of the medicines Ma was taking were prescribed to facilitate oxygenated blood flow to the brain to minimize the symptoms. Not taking them increased her dementia and threatened her life. I was not overly impressed with her doctor so I took all her prescriptions to a pharmacist to understand what they did and if any of them were unnecessary or counteracted the others. He was right on with his choices and I was humbled by the experience. I regret judging him so harshly, but she is my Ma, for whom I feel personally responsible, and he is a paid practitioner that I have no personal relationship with.

I had a hard time finding a way to get all the prescriptions to be filled at the same time every month so one trip to the pharmacy was all that was required. This actually became quite easy as I discovered unused prescriptions everywhere and actually got a free month as I had more than enough of everything. Now the challenge became getting her to take them in the proper dosages at the right times. This was accomplished by color coding several daily dose containers. The doctor changed her prescriptions to make her dosing only day and night so I could administer them without having to rely on her memory at all. So the dance began.

I used to fill the daily dose containers and gave them to her leaving her in charge of the taking of the medicine, this never really worked but I had to try. I used to leave the prescriptions in the kitchen cabinet until they disappeared early one month and I spent two days looking for them and finally finding them hidden in Ma's room. She claimed that someone had been sneaking in to take her drugs, a delusion. I told her that I didn't think there was a street use for aricept, lipitor, nitroglycerine patches and potassium. The medicines went under lock and key and I distribute them daily like Nurse Ratchet in "One Flew Over the Cuckoo's Nest". My Cuckoo's Nest is every bit as entertaining as hers.

I leave the morning doses in a cup on the kitchen table and usually return home to find one or more of them has not been taken. At night I physically watch her take the medicine like some attendant on a Psych Ward. What she takes and doesn't take is truly indicative of how delusional she becomes. I can manage my own stress level by insuring her medicinal intake.

Ma has been increasingly delusional since the death of my sister in November. She is definitely waiting for the end. I have mixed feelings about this as I get tired of taking care of her but really don't want to see her go. I want her to be happy and I don't believe she is suited for this world any longer. No entertainment beyond the daily paper and the unbelievably loud television watching. She relives better times from earlier days and asks the same questions over and over like a drunkard in his cups. She really needs to go to her final rest so she can be at peace and I need to feel empowered do go about the business of getting old myself. I really want to go like my father, full of piss and vinegar till my last breath, but I hope I never turn my two girls into Shanty Care Givers. Give me a pillow sandwich if I ever lose my wits and can't take care of myself.

The Buffalo Tea Party.

Ma has been drinking tea since she was a child. All her sisters and brothers drank tea, I believe they even put it in their pet's water bowls. This is not, in and of itself, a bad thing. It does produce some unique challenges for shanty caregivers. Before turning off the gas on the stove Ma melted 4 different water kettles. She really doesn't appreciate the gravity of this situation, she at least pretends it is quite normal to endanger yourself, your neighbors and the entire Fire Department for want of a good cup of tea.

Tea stains. Ma is oblivious to her surroundings and the protocol for preparation and disposal of her precious brew. My sister purchased a electric kettle for boiling water to insure Ma had the ability to steep 213 cups of tea daily, she has never used it. She puts the porcelain pot in the microwave with the tea bags in it insuring that the titillating tincture will stain the walls when it boils over. Just like when she used the now disconnected stove, she sets the timer, which she can't read or work, to about 9 hrs and 42 minutes and lets the brew boil uncovered till she remembers it is there or the unit shuts down. We are on our second microwave this year. When Ma needs a new caffeine fix she dumps the old into the porcelain wash sink side of the double bowl, If I am lucky, or over recently washed dishes if I am not. The sink is stained as are the cabinets, the dish caddy in the rinse sink, the floor, and the counter top. Once or twice a week I fill the sinks with hot water and Clorox, submerge the dish caddy, bleach the cabinets and floor, and rewash every cup and dish in the house. I have used more Clorox in the last 2 years than I did in the previous 52. How tea gets inside the cabinets on the door ridges is beyond me, but it happens. I have a vision of Ma doing some ritualistic tea dance when I am not around, where she purposefully pours tea on every surface so she can watch me clean. I have become her manservant, moving from surface to surface with a dishrag and Clorox, boy did I waste my college dollars.

We used to have 20 to 30 cups and mugs that were some color other than tea at one time. With breakage and permanently stained interiors we now have 0 cups and mugs that do not belong at some toxic waste dump. We have 7 current victims in waiting and 23 brave soldiers that have been entombed at the local dump because of falls from a higher level to a surface not conducive to soft landings. There are currently 4 cups of cold brew located around the house waiting for their opportunity to put Ma's manservant to work cleaning the rug, the floor or making their funeral arrangements.

For those of you who have read or believe the stories in the Catholic Bible I offer this picture of my final day on this plane. God is not even going to kill me, he is going to take me direct to my heavenly reward via Ascension, like Mother Mary and the Big J himself. I have more than atoned for the sins of my youth and for every gray hair I put on Ma's head.