Fear Runs Deep

Once Hospice took us under their wing, the coaching began. Our nurse was a warm, generous angel who worked hard to ensure we had everything we needed. Her attention was comprehensive; she did not stop with what Mom needed, she had genuine concern for my well-being as well. She also understood this “green” caregiver, who may have been actively providing a high percent of care for a few years prior, was still pretty naïve to the full scope of the situation in which we were engaged.

Under her tutelage, I traded in the sticky notes and scribbled scraps for composition notebooks. They add up fast although she did caution I should use them as a tool so I might monitor the events and not become caught up or lost in trying to capture too much detail. Some days, while Mom napped or our neighbor diverted her attention, I wrote. Re-reading some of the pages those bottled up emotions jump off the page and my heart and throat become constricted all over again as “oh, that day” is revisited. Some of them were more memorable than others. Many are a blur; like leaves whirling in a wind, swirling past so fast I cannot focus on any one in particular.

Since childhood I’ve seen myself as the observer. The dynamics of our family situation, which I have mentioned before or alluded to, no doubt set the precedent. My childhood was my normal; I had no idea it wasn’t universally normal until I was pretty well grown. By then, I was who I was but with knowledge comes freedom. Still, I recognize that there are sounds, smells, unspoken energies that cause the old patterns of emotion: fear – to rear up. It is only more recently that events have conspired to gift me with these revelations.

Gift! Yes, really it is a gift to finally understand some of the triggers that have held a choke-hold on my life. We keep repeating the lesson until we “get” it….. Those significant emotional events do so speed the process.

Somewhere I heard or read; I don’t think I dreamt this – a person with Alzheimer’s will exhibit behaviors reflecting their innate reaction to their life’s events; i.e. were their reactions predominantly fearful and angry or were they flexible and easy going?

Mom was reared by parents who used fear to motivate their children’s behavior. They were told that the Red River was so named for the bloody bodies thrown into it. This was a means of ensuring that she and her siblings would trust no one outside the family, I can only suppose. In fact, she told us that once on the way home from school, she and her sister were walking along when a car slowed to ask directions. Well, it might have been innocent – it was the 30’s but, as Mom tells it, the girls began to shriek and ran as fast as they could for home – they were not going to end up in the Red River! Fear runs deep.

Unfortunately, Mom’s marriage compounded her fears. Her husband, my Dad, was a dual personality: a loving, warm guy when he was sober and a scary, abusive drunk. He was a binger so there were lulls between episodes. Unfortunately those periods of respite had an underbelly of tension. The tension would mount to a frenetic pitch and his subsequent binge was felt as relief to me.

I remember feeling guilty that I secretly prayed he’d go get drunk so that we would be just the four of us – held up in a hotel room or in the car or wherever else we might take refuge — just not where his energy was causing my stomach to feel as though it was in the clutches of a fist, squeezing ever tighter. Much could be written on Dad; but I only mention him so I may better comprehend how Mom’s past informed her final years – months, days.

There were seemingly hours of repeated questions. “What happened?” “Where is he?” “Where have you been?” “When do we leave?” “Where’s Deb?” “When is Sunny coming? We are leaving!” She was riveted on these compulsive topics just as she would go through periods of constantly asking where her sister was. Early on, I made the mistake of telling her the truth, she’d passed. After a while, she forgot and asked again but I’d learned a valuable lesson.

As uncomfortable as it was at the outset, little white lies with just enough information to satisfy her questions were substituted for a truth I knew she could not accept. I’d like a penny for the number of times I said, “Oh, he went to the store, he’ll be back in a while.” The other tact was to try and change the subject to re-direct her attention to something else: take a walk outside – even just on the deck, work on a puzzle, bring out coloring books, look at a book with her and my favorite choice and one she seemed to also enjoy was Shel Silverstein’s Where the Sidewalk Ends. His lovely, whimsical and funny poems…..sometimes helped.

Other times we’d sit on the settee and I’d sing old songs….”That Old Feeling” was one of my standard picks – it’s also one I sing to my horse as I groom him when we are alone in the barn’s aisle – I wouldn’t knowingly subject other’s to my warbling…..but Mom liked it, or I prefer to think so.

Her natural instinct, as honed by her upbringing and marriage, was to be distrustful, fearful, self-sufficient and always at-the-ready for flight. Her interior and exterior states of being were in complete contrast. As her parents before her, she deftly taught her children to cagily hide their feelings behind deep, steep walls of protection. A smile and amiable exterior did not always correspond with the next action she might attempt. So, no wonder I was often taken by surprise at outbursts that seemed to manifest from nowhere – even though I was diligently watching for clues.

Predominantly during the earlier period, my lack of success in heading off what would become a HUGE event was my internal struggle to medicate her or medicate early enough. This resistance to medicate at an early enough stage in the proceedings to affect an impact and keep her from enduring the ravages of her imagination was an on-going struggle. The nurse would nicely chastise then counsel me to be more vigilant. Like a remorseful child in school being told to sit in the corner, I would internalize the reprimand and beat myself up some more. What had I missed?

Finally I realized it wasn’t my fault entirely – no one could perceive many of her mood swings. Until a volcano begins spitting and spewing it has the appearance of a lovely mountain. Who knows what is taking place inside the belly of that beast? It was no different with Mom. Once I realized that I was doing my best to ward off these events but that she was really good at disguising their materialization, I understood I needed to implement other kinds of strategies – but what? That was the million dollar question and one I struggled with. Frankly, I still wonder two years after her passing — what was I missing?

Ultimately I accepted and made peace with our nurse’s advice that the medication was an aid in pain prevention for Mom’s psyche. Medication was the thing that would help her cope with the torment and ease her discomfort. So, I worked harder at anticipating and being preemptive.

Each night when I tucked Mom into bed, besides the regular hugs and kisses and “I love you,” I’d leave her with: “Get some good rest so we can have a great day tomorrow!” Hope began each new day full of the promise it just might be the perfect one. We never reached my secret goal of making it through an entire day without incident but there were stretches of time and “moments” that I will forever cherish. Those cherished moments made all the other ones bearable.

Our neighbor from two doors up, Farmer John [not his real name], will, no doubt, be the subject of one of my rants one day soon. Today I consciously choose to view him as a gift shoved into our lives to help me cope with a situation in which I felt uncertain. I was afraid I was not strong enough to face it alone – Mom was a formidable woman. He was also there to shine a spotlight on how I allowed others to treat me – doormat is the adjective that readily springs to mind. This worm has turned.

However during this early period while I was not thrilled with his insistent intrusion into our insular lives, admittedly, I felt a level of relief at not facing those long hard days alone. Meeting John, one knew immediately that a little went a long way. He seemed to feel he needed to shadow our every breath, insistently dogging anything we did. He’d arrive before Mom was up in the morning and I would sometimes have to ask him to leave at night after she’d gone to bed. In retrospect, he brought more drama and discord into our lives than help but during those times, my fear kept me from understanding this truth.

To be completely honest, it was helpful having another individual at hand to deflect the many changes in mood which would overtake Mom. It would have been more helpful had it been a different person but we don’t always get what we want. There were many times when Mom would have a problem with one or the other of us – she spent a whole day angry with me. I finally realized she must have thought I was a stranger in her house using her things.

The day I am thinking of now, though, was a day when Mom believed John was someone who was planning to kill us. That is exactly what she told me. We’d been on a trip out to the barn. How I even contemplated the notion that I might groom my horses is hysterical. But I was desperate to have some semblance of normalcy in my life. My horses were and are always a sweet balm of peace and healing; they buoy my spirit like nothing else can.

We’d barely arrived when Mom became angry and agitated and began stomping around. I flew into high gear, putting everything away; thrusting treats into the horses’ mouths almost faster than they could chew. Quick kisses and hugs and we were packed back into the car.

As usual, John needed to drive, Mom sat in front and I was slumped in the back seat feeling defeated. My upset coupled with the obstacle of being in the back left us in silence – grateful silence since John was usually filling the airwaves with non-stop mindless chatter about his uninteresting life. The silence was only broken periodically when he asked Mom if she was okay. She’d nod.

We were close to home when we were delayed at an intersection due to a large truck having turned the wrong way. There was an overpass he could not clear and he was trying to maneuver himself out of his predicament. I made a comment about the delay. Immediately Mom piped up with, “Is that my daughter’s voice? Is that you Deb, are you here?” I verified I was, “I am right behind you.” Funny, even now I feel a lump rise up in my throat as my eyes well when I remember.

We pulled into the driveway and were planning on going in. John said he was going to go pull some poison ivy. At about this time the chaos level rose. He came back to get his ax, which he’d left near my wood pile so he could remove an old root. This action was the icing on the cake. His having that ax in his hands triggered a major event.

She buddied up to him briefly telling him how much she appreciated all he did for us and how much she liked him but in the next moment, she was trying to scramble into the house while preventing his following us. He was obtuse but even he could see she was agitated so decided to forego the root and started up the stairs. Under her breath she warned, “Sunny, don’t go in there. He’s going to kill us.” [Sunny was her sister.] She then picked up a very large rock that was sitting in a group of large rocks we’d collected and had placed on the end of one of the steps leading up to the doorway.

Fortunately I noticed the rock in her hand before she slammed him in the head. She wasn’t ready to come inside; she was spiraling into a frenetic state. She was now obsessing over how this serial killer was planning our deaths. Somehow she got her hands on the ax! I was able to get it away from her and we finally trooped into the house.

There was a special pill for situations such as this: Lorazepam. Naturally, she refused – she took the pill from me and threw it into the glass of water. I pushed another pill into a grape. After some persuasion, I was able to get her to take the grape into her mouth but almost immediately, she was at the sink spitting it out; I’d forgotten the skin might be a problem.

To reiterate, these were the early days and while there had been and was a lot of on-going insane activity, I’d not seen her worked up to this extent before. We [the medical team really] were still in the process of determining what ratio of which drugs would best complement her needs. It was prudent to begin with less and change as needed. If I could have gotten her prescriptions into her in a timely fashion, I’m not certain they were up to this day’s challenges.

If situations occurred during the day, protocol dictated I call our nurse. Fortunately she was free and took my call. Mom had been locking and relocking windows and doors. Our nurse instructed that I should let her and keep reinforcing that she was safe. Mom was still highly agitated about John’s presence. You’d think I’d have thought fast enough to tell him to go the hell home right off the bat: removing the irritant might go a long way. Since so many things were always causing her issues, like Peter and the Wolf, I overlooked that avenue unfortunately. Our nurse did not – she told me that he needed to go.

True to form, he was resistant. As I became more adamant; he had no choice but to leave. It could never be said that he was the sharpest tool in the shed. Although he owned a very sharp ax there was no correlation. Before leaving, he stashed the ax and wandered home, presumably.

The pill debacle was explained to the nurse. I provided her with a guesstimate of how much of the pill she may have consumed. Her dosage was not very high at that time and the interval was also set pretty wide. Unless a nurse or doctor instructed otherwise, I was not supposed to change anything. She instructed me to give her a pill. She said she’d call back in a short while to see how we were doing.

A statement about timing of pills: just like all things, if one is anticipating strong pain, it is best to take the medication before the pain increases to such a pitch it is able to get a foothold. If one waits too long, the pain supersedes the medication, the drug has no power. There were many a four hour span waiting with no good result until the next time a pill could be given – when the chaos is extreme, four hours seem an eternity.

Somehow I became inspired and told Mom that the nurse had called and gave me information: “….our house is surrounded by police; they are monitoring us and will not allow ‘him’ to come near us. This pill is a special protection pill that your nurse gave us so you would be safe. If you take this pill, nothing can harm you.” I reminded her that all the doors and windows were locked and that we were safe.

She took the pill, no hesitation!

We were lucky and after a short while she began to calm down. She sat in her chair at the kitchen table and I pulled mine around so I would be beside her. My arm around her, holding and comforting her, I sang a song from Sweeny Todd, “Not While I’m Around.”

When the nurse called back, she was happy to hear she’d calmed down but she told me not to hesitate to call the 800 number if I needed to. It was after five and she was going off duty.

Somewhere before calling the nurse, I believe I’d put a call in to my brother who lives very close by. He was busy and would stop in later. He finally did breeze in after all the fireworks had long extinguished. Maybe it was my sleep-depravation spurring hyper-sensitivity but I almost always felt he was sporting a condescending air toward me. He seemed to be inferring: Mom is fine, you are the one who is hyped, the one who is wired and if you are tired, it is your own fault.

At the time I felt incredibly angry and abandoned. Tick tock, tick tock….in time he too would finally have a turn. He would face his own personal significant emotional event with one of Mom’s wild meltdowns that would wake him up to the reality of my everyday life. When things are up-close-and-personal events are quite clear. But that wouldn’t come for some time and I would continue to bottle up those feelings of dejection and guilt. Deep down I worried that somehow I was the cause of her dementia just as every child of an alcoholic knows they surely are the cause of their parent’s drunken rages. If I was just able to do things rightly, life would be so different.

There were so many complicated emotions at play. Triggers and reflexive responses all learned and improved on since childhood; like a tangled snarly knot to be sorted through. Two years later and I am finally beginning to see the light in the end of that tunnel. Mom was fond of saying, “What a life.” Yes, Mom, what a life…..but what doesn’t break us makes us stronger, they say. There was a reason for these particular circumstances to present themselves in front of MY feet. These are my lessons. Fear does run deep, but it can be faced down. It only has the power we give it.

Not While I’m Around

from Sweeney ToddNothing’s gonna harm you, not while I’m around.
Nothing’s gonna harm you, no sir, not while I’m around.
Demons are prowling everywhere, nowadays,
I’ll send ’em howling,
I don’t care, I got ways.
No one’s gonna hurt you,
No one’s gonna dare.
Others can desert you,
Not to worry, whistle, I’ll be there.
Demons’ll charm you with a smile, for a while,
But in time…
Nothing can harm you
Not while I’m around…
Being close and being clever
Ain’t like being true
I don’t need to,
I would never hide a thing from you,
Like some…
No one’s gonna hurt you, no one’s gonna dare
Others can desert you,
Not to worry, whistle, I’ll be there!
Demons’ll charm you with a smile, for a while
But in time…
Nothing can harm you
Not while I’m around…

Compulsive Thoughts

The more I think about the night I was awakened by Mom exhaustively struggling to use the litter bag/box instead of the bathroom amenities continues to mystify me. At the time, I was overwhelmed with the moments that were slamming past faster than bullets pelting a fox hole. There were other inappropriately odd behaviors but I didn’t have the luxury of time to analyze how inappropriate they were. Besides that particular night, as described in Early Hospice Days, there were other times when she struggled to use those same places and would fight against my efforts to guide her to the conventionally acceptable location for such activities.

There were times when she took on the manner of a cat – a big cat – and I mean this quite literally. She would growl, hiss and gnash her teeth at me. Was she playing? At the time, I wasn’t sure but I was leaning toward a big negatory! It was strangely bizarre but I didn’t have time to dwell on it. Perhaps also part of her “cat” persona, Mom was fond of using her finger nails as weapons when she felt threatened. It seemed everything made her feel threatened. For my own safety and that of anyone she encountered, I took to trimming her nails when she slept.

We, well, now I, have several cats so maybe she got the sense that she belonged with them; to them. Maybe she felt disconnected from humans but felt an alliance toward or comforted by the cats.

Compulsively my brain continues to review troubling incidents over the course of her disintegration. Leaping ahead to very close to the time she passed, her innate sense of how to chew and swallow food almost totally escaped her. I’d heard stories of such things but when it’s real and in front of you, it’s pretty horrifying. She would chew for a very, very long time disregarding my encouragement to swallow. She didn’t seem to know what that meant any longer.

Understandably, she often manifested the manner of a child with my role alternating between big sister and Mom. She adored both of them so, while she only occasionally saw me as her daughter, being those two beautiful women was still a pretty good gig.

During these reveries, I often chide myself for not knowing or making less than perfect choices. Here, in my “now,” everything looks so perfectly clear but isn’t that always the case? Hindsight is crystal, is it not? Coping with Mom’s departure includes acceptance and forgiveness. There isn’t one moment I will ever have the opportunity to “do over.” All I can do is endeavor to make better choices, informed choices. No, I do not have all the answers – not even close. But what I do have is a valuable commodity: experience.

Experience helps us make our choices and when we fail, which we all do some of the time, we learn, hopefully. We pick ourselves up and make better choices, as we must, ultimately. Within each struggle, each stressful situation there is an opportunity for growth: a blessing for our lives.
If you take away nothing else from reading this, heed my plea: do not beat yourself up for what you could have, should have or would have done differently. Those moments are over. Flip it and use the knowledge gained to make a real difference RIGHT NOW.

Maybe you are currently struggling in the trenches – each day, each moment is a new beginning. Breathe, collect yourself and simply do the best you can. No one has all the answers. Knowing that your situation is not unique, that others share similar events may bring you comfort as you do your best to comfort the one you love.

Those of us who are not currently engaged in daily, weekly or monthly encounters – the lessons we’ve learned as a result of what we’ve been through are certainly applicable to all else in our lives. Don’t do as I do, do as I say – my preoccupation with compulsive thought is not recommended, though it does lead me to uncovering revealing information that impacts me on all levels. Reflection spurs education. It has also opened my eyes to some of the fears that have held me captive most of my life. More and more I venture from the safety of my self-imposed limits. It’s a process.

During the years of living alongside of this hideous disease, watching it devour my precious Mom, there were times when I used to think, “Why was I placed on this path? Why must I go through these circumstances?” Now I embrace that period with gratitude. It was an honor to walk that path with Mom and probably the most important thing I’ve ever done in my life. Bette Davis’ quote has been cited many times but it is so applicable to AD patients: “Old age is no place for sissies.”

In Mom’s more lucid moments, back when she still usually knew I was her daughter, she would plead with me not to put her into a home. Other times, when she was able to contain her fear, allowing the courageous Mom I always knew her to be to step forth; she’d coax me to “put” her somewhere so that I could have my life. There never really was a question in my mind as to what would happen. She never abandoned me; I would not abandon her. It’s not the choice that everyone can make or should make. It was MY choice.

For better or worse, we make our choices; some easy, some – not so much. But, if we listen to our hearts and follow our inner knowing, we cannot be too wrong. Love will always guide us to our highest good.

Early Hospice Days

It had been yet another long day followed by an even longer evening into night. As evening came on so did the stronger sundowners symptoms. Mom would obsess over “they” and “them” to the point where she would become highly agitated and work to find ways of leaving for home. Sometimes she’d put her hat and coat on and head for the door. She was not comforted by being told that she was home, this was her house.

The early Hospice days were a real learning experience; the nurse was doing her best to guide me, helping us to find our way. There are many “firsts.” We had our first night call to the Hospice help line. Although protocols keep changing as we explore what works or doesn’t work to keep Mom comfortable, the current protocol is that after certain pills are given for the night, additional ones may not be given for a period of time. This is just common sense, really. Given Mom’s history of falling, we do not want her at a bigger risk than her normal unsteady self.

She could not seem to get to sleep and as it was after 1AM, I put the call through to the answering service. They are all so very nice. After about 20 minutes, Nurse Cathy called. I’d been sitting on the edge of Mom’s bed trying to soothe her and she seemed to be finally calming. After apprising Nurse Cathy of what had been happening and that Mom seemed to be finally calming, she did not direct me to take out anything from the magic box hidden in the back of the refrigerator. We could forego adding additional drugs this time. She promised that she would document the call so that our regular nurse, Donna would be given all the details first thing in the morning.

About 2AM Mom was sleeping, snoring even. I tippy-toed into my room, got organized, took my shower and was ready for bed. Mom was still sleeping when I laid down at 3. Gratefully I melted into the soft bed; drifting into that most sought commodity, sleep. My kitty Ozma purred gently in my ear, helping to ease me into sleep.

A loud rustling of paper pulled me back faster than a glass of cold water thrown in my face. I sprang up, Ozma flying off the bed as I bolted from the room and into the hallway. We keep a big empty litter bag ready to accumulate the used litter. When full, it is bundled up for garbage and we start again. Mom had the bag open, her drawers were pulled down and she was trying to maneuver herself to use this bag as a toilet. I let out a scream as I ran to her, pulled her jammies up and tried to walk her to the opposite end of the hall to the bathroom. She passed it as she came down the hall from her bedroom.

As was typical, her head was down, her longish hair falling over in front of her – a good hiding place. Looking back she makes me laugh – Tim Conway’s Mrs. Wiggins way of walking was a carbon copy of the way she moved. There was a great deal of arm movement and head wagging but hardly any forward momentum. She was pissed at me for interrupting her.

As we headed for the bathroom, we passed a litter box stationed halfway down the hall. As I tried to get her past, she stalled and worked at dropping her drawers to use the litter. Her level of being pissed off increased as I, again, prevented her from completing her objective.

When she was acting like a petulant child, I would sometimes speak to her like a cross Mom and in a clipped way just issue orders. “Walk,” I barked. Somehow I managed to get her to the bathroom and settled on the people toilet as I explained that the litter was for kitties and the toilet was for people. She, gratefully, had been wearing a pull up which I helped her change once she finished doing nothing but sit on the toilet. Pull ups were getting to be my favorite invention.

It took a while but finally she was cleaned up and settled back in her bed. Still, she must have gotten up twice during the four hours I slept. I got up once myself and peeked into the bathroom after checking on her and found things were different. When my alarm rang at 8, I saw that she’d removed her pull-up and left it on the toilet seat. What were the odds I’d be laundering sheets again today I wondered as I padded out to the kitchen to begin the morning rituals.

Getting her up at 9AM was not easy. She’d been up a good part of the night. During the days it was a challenge trying to keep her awake and busy. Engaging in anything that interested her was preferable but ultimately she would participate in activities I never suspected she would tolerate: like coloring or working on puzzles. In years past, we used to do huge puzzles with 10,000 tiny pieces or maybe more…..she gave them all away after we’d done them a few times. Now we were working small puzzles geared for kids 5 years old and up. Sometimes she did well, other times, not so much.

Humans have a much higher capacity than we give ourselves credit for having. We can do without sleep [for a time] and we can accomplish a lot more than we think we can. I often thought to myself that my emotional/psychological capacity to take on more of the struggle was close to full. There was no more room inside me to be more, do more. Yet, if you just keep showing up, somehow humans can. We can do so much more.

It is now evident that part of my coping mechanism was to keep busy. Oh, there was a lot that had to be done but now I wonder if sometimes maybe the dishes didn’t have to be done this time – let them wait and do a larger batch next time. Maybe, I could have used that time just to sit with Mom and hold her hand – something we did do but, now that she isn’t here, I think about how many times more I might have taken advantage of the opportunity to hold her hand while she was around and how much she may have liked to have her hand held by me – or her sister or her Mom – whoever I was to her at that time.

Yes, we do what we do and later we can only use the analysis of it to help us do better for what we do next. I can’t change what happened but I can apply my growth to future decisions and actions.

My keeping busy kept my mind from completely acknowledging what was happening, my way of coping was to be so busy doing everything I could avoid the reality of what AD was doing to my Mom. Today, I think I am more inclined to sit back, observe and watch to see how to proceed. This galls some folks but I don’t want to be in a hurry anymore…..too many moments have been missed hurrying to “fix” this and that. I missed out on so many more important things, like sitting on the rocking bench on the deck watching the squirrels and their antics while I held my mom’s hand and talked about nothing important.

These were the early days when I was struggling to understand. But, since the disease keeps progressing, the symptoms keep changing so there is never a point at which to rest a moment and feel, “oh, I’ve got this.” No, it’s always a moving target. The Fellini movie analogy is about the best I am able to come up with: dealing with AD is like being lost in Juliet of the Spirits. I can’t begin to imagine Mom’s perspective!

The Nearness of You

Almost two years since Mom has passed and she gave me a present this morning. The office in which I work has an air vent just above my head that sends down cool air. Like my Mom, I have never been able to stand any amount of air on my head – even warm air. Headaches are the result of being in the draft and the few conversations I’ve had with the maintenance group has not yet yielded a fix for my situation. I’ve been wearing hats. People look at me and think I’m nuts but I’m tired of being uncomfortable with a “freezing” head and constant headaches.

My Mom, many years ago, bought a VW bug – a new beetle that I am still driving today. One time when we were at the dealership waiting for some work to be done on her car, we spent time looking at all the VW merchandise they had for sale; all prominently displaying the VW emblem. I spotted a funny little hat that reminded me of the one Henry Fonda wore in, “On Golden Pond.” It was so cute! It was adorable on Mom so I persuaded her to buy it for herself. She kept it in the door pocket of her car for the longest time but never wore it. She finally brought it into the house and put it in one of her drawers.

Before heading out for work this morning, I decided to find it and see if I could wear it in the office instead of the stupid hat I’ve been wearing. Most of Mom’s room is as it was but I’ve placed a few things in there just to get them out of the way. A bottom drawer was partially blocked so I started to give up. An overpowering thought came into my head, “Just try a little harder.” So, I finally got down on my knees and reached way into the drawer; feeling my way around. I came across something made of material and kind of hard so I thought it was the brim of the hat I’d seen folded and “somewhere” in one of her drawers during the time Mom was still with me.

She was famous for moving things around so there’s no telling where this hat actually is at this point. One day, I will decide it is time to organize and make sense of all her things but, for now and until I feel less emotional, it’s the way it is.

Thinking this hard cloth object was the hat, I pulled it out to find it was a sock. Hmmm, I thought. But I was already shaking my head and smiling because Mom loved to stash things. She always thought someone was going to take her money or jewelry or whatever she liked so she’d hide them. Last year I found a little money under the paper lining in another of her drawers. Today, I reached down into the sock’s toe to reveal a wad of bills. There was a total of $77 paper-clipped and wound around with a rubber band. So typical!

A little laugh just sort of slipped out of me. Just like Mom – almost two years later and she’s left me a surprise present in a week that’s been pretty stressful. It’s a delightful find although I still haven’t found the hat or the “Mother’s ring” my sister gave her a very long time ago.

A few years before Mom passed, that ring disappeared. It was missing from her finger where she had always worn it and I didn’t see it in any of the usual places. Now and then I look for it but have yet to find it. It could be in a pocket of a coat or sweater. It could be under the paper in a drawer or in a shoe. I haven’t torn her room apart – I think, hope it will turn up. The concern that it fell off her finger when we were away from the house does cross my mind. Each time this thought surfaces, I do my best to block it.

One of these days, perhaps, I will have another delightful surprise when I find that ring. Since Mom wore it for so many years, my sister would love to have it back again. I’ll keep looking and, in the meanwhile, there may be other little sweet surprises Mom has booby-trapped her room with for me to find. Thanks Mom; I love you too.

There is a quote by an unknown author I may have posted here before — I know I’ve posted it to my Facebook page; but I love it – and so here it is:

“Your Mother is always with you. She’s the whisper of the leaves as you walk down the street. She’s the smell of certain foods you remember, flowers you pick; the fragrance of life itself. She’s the cool hand on your brow when you’re not feeling well. She’s your breath in the air on a cold winter’s day. She is the sound of the rain that lulls you to sleep, the colors of a rainbow; she is Christmas morning. Your mother lives inside your laughter. She’s the place you came from, your first home, and she’s the map you follow with every step you take. She’s your first love, your first friend, even your first enemy, but nothing on earth can separate you not time, not space…not even death.”

Hospice Steps In

Mom twirled and rolled it around and around in her fingers, bounced it a few times in the palm of her hand kind of the way she used to bounce a jack in her hand when I was a kid and we’d play. She was such a great jack-player. Then she looked up at me and asked, “Is this a door key?” Shaking my head I couldn’t suppress the smile when I responded, “No, Mom, it’s your vitamin, would you take it?” It was the last of the morning pills. It was taking longer and longer to get those suckers down. She finally did take it which was a feat considering she thought it was a door key. But, who knows what “door key” really meant to her any more.

We had just been accepted into the Hospice program; and so the next leg of our journey had begun. We is the best way to describe it – when Hospice intervenes they are there for the patient but they are there for the family as well. They supported me as much as they supported Mom. And we sure needed them; I sensed that the fall(s) and subsequent hemorrhage in her brain had accelerated the Alzheimer’s and dementia. The “presenting” signs were surely more magnified. I was in a quandary.

Thankfully the hospital’s follow-up visit resulted in a recommendation Mom be under Hospice care. The Hospice team came within a few days to assess her situation and agreed. Although they did point out that Mom did not really fit their protocol. Still they understood that we were drowning – well, certainly, I was and that Mom was in need of comprehensive assistance. They said that even though she was a-typical, they would take us on.

This incurred a flurry of activity. Their entire home team was required to meet with a new patient and family within one week of that person coming on-board. We were “jumping through hoops” for a bit until the meet and greets were accomplished. The team consisted of a visiting nurse to monitor Mom on a weekly basis. She was available by phone between visits. This came in handy from time to time; I would leave her messages on her cell if she was with another patient. As soon as she could she would call and provide advice and support on the phone but sometimes, she would change her schedule to come out and see us that day. She became part of our extended family. She taught me a lot. Oh boy she sure did — I was so naïve!

One team member was a minister who stopped in now and then. He was kind, he listened, he did not try to enforce his views on us but did offer a spiritual avenue if we wanted it. This pretty much bi-passed Mom who seemed to respond kindly to him but had no understanding of who he was or why he was visiting us so virtually ignored him.

A social worker was part of the team. She initially provided information about various matters. She gave me a list of support group meetings I might attend – but with no one to stay with Mom, it was highly unlikely. My brother and I discussed getting to a meeting but the times were odd so it never came to pass. She also gave us information regarding financial issues. There was an extensive application to determine if we would quality for assistance with our electric bill and a few other items. We didn’t quite then…until our savings account was almost depleted, we were not eligible. She also gave me information so that I could get Mom registered in the County and purchase a bracelet for her in the event she got away from me and went missing. The bracelet was pricey and Mom would have ripped it off her arm and lost it so I only got her registered.

Immediately it became apparent that the house needed a lot of modifications to keep Mom safe. My brother put in several hand-rails anywhere he could – in the kitchen, hallway and bathroom. He put up rails in the tub enclosure too. We also installed a rail in her bedroom. I bought special knob covers for the stove but they did not work out well. I tried a special doorknob cover that is sold to keep kids from opening doors to the outside but there were a few issues.

First, I felt it would make Mom feel trapped and upset to see this contraption on the door. Second, it was a hassle to deal with. Okay, and third, I worried Mom would play with it and get it open. There were times during the night she’d already proved she could get up and move around the house without me hearing her and I am a light sleeper. I found her one night out in the front room on the floor – it took a lot of figuring and working at employing body-mechanics to get her up on her feet because I am not big or strong enough to lift her.

No, we needed something that I could depend on. So, we installed a keyed deadbolt on the side door and a “pin” on the front sliding glass door. They made me nervous because, in the event of an emergency, I had to get the key fast. But, these door fixes were extremely handy from time to time; keeping Mom from skipping off – something she was very good at doing. There is also a door in Mom’s bedroom but the way her room was laid out, she’d have had to really work at getting out that way and I had a bar installed behind the blinds that hang over the door, masking its presence.

She did, nevertheless, hatch a plan one day to escape through that door but once she became engrossed with the first part of her plan, she forgot the rest of it before she could fully execute it. That was one benefit of her poor memory – sweet and sad at the same time.

Under Hospice we were allowed to have a home health-care worker five days a week for two hours a day. The available times did not really fit our lives. Mom was still in bed when they had someone available to come. There was no need for someone to come and watch her sleep. Also, if Mom was having a good day, we wanted to get out and do things so she could enjoy her days – not sit and wait for someone who often made her upset. We settled on three times a week.

The first woman did not work out. Because she had been a home healthcare worker for some years, I expected she had experience with all sorts of situations. Wrong! Although these folks were trained, they didn’t all have extensive experience with a variety of situations and certainly not ones in Mom’s category. In the main, and only judging from those we met, they were used to patients who were bed-ridden or not very mobile. The patients were also more lucid.

They were expected to come in and fix light meals, do some cleaning, assist a patient with a bath, do their hair or file their nails. They might run some errands for them – go to the post office or pick up some groceries. Mom was not going to allow anyone, particularly a stranger, to assist her with a bath. She wasn’t keen on me, most of the time, since she didn’t always know who I was so she surely was not allowing anyone else that intimacy.

As I said, in the beginning I was extremely naïve. Her first couple visits I was on hand so I could assess who she was and how she’d treat my Mom. Then, one day after a few of her visits, I decided I could leave for a short while. Since my neighbor was also on hand, I took the opportunity to run and get some groceries. I arrived home to pandemonium.

Evidently, the woman decided to help Mom take a shower. She got Mom into the bathroom and undressed and a shower cap on her head. Then Mom freaked out, got away from the woman and somehow got her clothes back on and she skipped out the door and was heading down the driveway when the neighbor spotted her and was able to coerce her into going up on the deck and sitting there. That is where she still was when I arrived home. It took some doing to calm Mom down.

There were a few other wrinkles with this particular woman so I had a chat with the nurse and we ended her time with us. We had to wait for someone else to be available. They finally came up with a nice lady who spoke little English and due to a problem in her throat, only whispered, barely. My Mom had a hearing problem and could not hear her. Hell, I could hardly figure out what she was saying. She did not last long either.

Finally, we hit the jackpot and got the sweetest lady with whom I am still in touch. She would read to my Mom and give her big hugs which Mom just loved. She told me about some really nice cream so I bought it for them to use. She’d take Mom’s shoes and socks off and rub the cream into her feet – again, Mom just loved this. I’ve heard the expression that three’s the charm – it was this time. We were really happy to have been lucky enough to have her with us.

She admitted that she had never worked with a patient with the extreme emotional, psychological and physical issues Mom could manifest. Sometimes, it was funny to see the expression on her face in the midst of an “event.” Seldom would I leave them alone. If I did, usually it was to go into my bedroom just for a little while but more often than not I wasn’t there long before my name was being called.

Healthcare workers are not allowed to administer medications based on their judgment. To clarify: if a patient is supposed to have a particular medication at a certain time, they could give it to them. However, “at cause” medications – ones they would need to make a judgment call about, as in my Mom’s case, the patient becomes agitated and needs a special pill – healthcare workers are not allowed to administer this – only a family member or, in our case, we allowed the neighbor to make the call if I had run to get groceries or pick up a prescription.

Hospice provided all of the prescriptions Mom’s doctor prescribed that were related to the issues they were treating her for and they were delivered to the door. For example, her thyroid and heart medications were not covered so I still needed to order and pick those up. They also provided special items for her convenience like a toilet seat booster to lift up the seat so it was easier for Mom to fit there. They gave us packages of “pull-ups” and special “sheet protectors” that I would place in her bed to protect her mattress.

They gave us a box of different lotions, waterless soaps, powder, surgical gloves and a box of specialty medicines I tucked in the back corner of the frig. The medications in the box were designed to address a host of extreme issues. It included morphine, a word that I would get over. Our nurse would say that she had patients living on 100 times more a day than Mom would ever be given for a special situation and those people were quite normal – not like the drug-head an over-active imagination might conjure when hearing the drug’s name.

The nurse and I would have many conversations about the time between visits. She came twice a week. She always took Mom’s blood pressure, listened to her heart, and checked her oxygen level and weight. She spoke with Mom and then, as time progressed, she would spend time talking to me – listening to me. As I mentioned, she taught me a lot. She would ask so many questions, I began writing everything down and kept copious notes about everything that happened during the day. There was no way I could remember all that happened in that period. Some days were so packed with events that I could not keep up but I worked hard to at least note the times when pills were administered, meals were eaten, what she ate and BM activity – oh, this became a project in itself!

Hospice worked with different doctors who specialized in elder-care. We switched to one who made house calls. He was extremely nice, patient and understanding. He was also available by phone when times got tough. He was very supportive and comforting. We were ecstatic that he’d come to us because as the time went on, it became increasingly challenging to take Mom out.

The unsung heroes who were never seen were the nurses on the call-in line. During the day, I could call our nurse and ask advice if there was a situation where Mom was not calming down and becoming more and more agitated or some other issue. But in the off hours, it would have been scary save for the call-line nurses. I would call a special number and leave a message. That person would take my information and in a short while, usually, a nurse would call me back. The nurse would ask questions and listen to what was happening. Sometimes this is when that mysterious “special box” hidden deep in the refrigerator would come into play. Other times I would be told to give another dose of the calm-down drug we were using: Lorazepam.

We started at a very low dose and over the course of months, this grew and grew. It just kept taking more and more to calm Mom’s agitation. There were other drugs used to help her sleep at night and reverse the sundown syndrome. This way, we could have a more normal day – getting up in the morning and going to bed more normally at night. The daily cocktail of drugs was designed specifically for her to give her the best chance of spending a more normal day.

Sometimes I would begin fretting that the drugs seemed excessive or I was resistant to using that calm-down drug as quickly or readily as I learned I had to – I think I shared this before but it’s an important point. The nurse would say, “If your Mom had a migraine or other strong pain, would you not give her something to alleviate this pain?” Of course, I would. The psychological pain Mom was experiencing was causing the agitation and sometimes violent outbursts and that meant using the drugs that would help to ease that pain.

Another really useful tool that helped me monitor Mom was my “magic picture.” That’s my term – it reminded me of the viewer Ozma uses in the Oz books [L. Frank Baum] to see if anyone is in trouble. So that I could observe what Mom was doing in her room and ensure her safety, we installed a baby monitoring system and this was a genius complement. We had just one camera in Mom’s room. I placed it high in one corner so I could see her whole bed and a good portion of her room. It came with a monitoring device that looks like a smart phone.

It had visual and audio so I could see and hear everything. During the night I would usually turn off the audio because her snoring kept me awake. If I was in the front room and she’d gone to bed, I could watch on my “magic picture” to insure she was still in bed – there were times when she’d bop back up and I’d have to start the “going to bed” process all over again. Some nights this was not easy, not at all easy.

During that first period in Hospice, the goal was to get our lives turned back around to keep more normal hours. This took a lot of time and patience but with a lot of tweaking, recommendations from our nurse to me and to the doctor, we did finally get things more orderly. Notice I do not use the word, normal. We were well past the days when anything would be normal again but, when I think about it, I don’t believe my life was ever normal from childhood to now so why would this juncture be different?

Back to the ER

When we are sleep deprived and running at maximum capacity navigating through the days, we lose precious perspective. It’s paramount for caregivers to have some down time so they may return refreshed with clear vision.

That wasn’t happening for me; there wasn’t anyone who could come and be with Mom except briefly when I ran to get groceries or pick up prescriptions. There was a neighbor, who was also very needy in his own way, who did help by diverting Mom’s attention for periods of time. Sometimes he would take her for a drive when she would become so fixated on “going home.” While they were out, I’d hurry to clean and fix things I hadn’t had time to take care of amidst the chaos.

But, at the outset, there was Mom and me. We spent every minute of our waking day together and some were very long days. The old adage that one cannot see the forest for the trees definitely described me. I was so involved in the moment that I was missing the big picture. Finally, there was one of those “AH-HA” moments and I realized that something was really wrong.

Mom had gradually lost a lot of her stamina – yes, she was in her eighties but this was my Mom who could always run circles around me. She always had loads of energy. Now she couldn’t get up in the morning – but was going to bed later and later. Remember, this is before I learned there was such a thing as “Sun downing. “ For everything that was going on there were reasons why it could be expected. Yet, that day came when the culmination of that “whole picture” was not jiving. Something was wrong.

My brother and I discussed it and then I called her family doctor whose only response was, “If you can’t handle her, take her to the ER.” The tone of his response was rather cold and detached for a doctor who had been treating her for many years even though it was the right answer. We took her to the ER – and thank God we did.

Robert came over first thing in the morning; Mom was completely unable to motor herself. We didn’t wait to try and get breakfast or pills taken care of, we decided to head over right away. He had to carry her to the car and lift her in. When we arrived, fortunately there were wheelchairs available so he did not have to carry her from the car. We did not wait long before we were ushered back to give history and begin the tests.

It was a very good thing that she’d not had breakfast or pills. This assured that the blood work and other tests should have the most accurate results. The intake doctors immediately thought she might have an infection [upper-respiratory or bladder] going on which would cause the symptoms we described. With the surrounding AD/dementia it was hard to differentiate observations but some were grossly more exaggerated lately. The hospital stall was very thorough; running all the blood and urine tests as well as taking a chest x-ray and cat scan of her head.

We must have arrived by 9:30AM and by 11:30AM she was resting very comfortably – snoring, in fact, under several layers of heated blankets. They hooked her up with oxygen and an IV. By this time, her little body had already absorbed that enormous bag – she was definitely dehydrated. Water was never anything I was able to get her to drink – it was almost always a fight.

By flying out of the house so quickly, I didn’t have any breakfast either but did manage to grab one of Mom’s chocolate Boost drinks and I’d made a cup of coffee which I’d brought in a thermos. Those were long gone and I was hungry. My brother left to go to his bank – he could not sit and wait – and promised to bring me back a bagel and some juice.

Funny how different we two are: I prefer to be here, watching, monitoring, holding her hand, being here when she opens her eyes to find that nothing is familiar, repeatedly explaining why we are here and that she is okay. I needed to be there for me as much as for her. So, “The View” ladies kept me company while Mom rested and I read my book awaiting the results. Mom slept peacefully which was comforting.

The results came in: Mom had a blood clot pooling into the right side of her brain. They gave her something to decrease the likelihood of a seizure due to hemorrhage. They described their findings and our options. We could do nothing and I surmised that doing nothing was the same as writing her death certificate: she would go to sleep and that would be it. It wasn’t pretty.

The second and only option we really considered was to move her to a specialized hospital, one that dealt with these kinds of neurological issues. She would be evaluated there. We said, pack her up, how do we get there. They were relieved and communicated their relief by telling us that not everyone would make that choice given her age and surrounding issues, i.e. Alzheimer’s and dementia. When my brother and I looked at each other, I could see in his face that’s what he wanted but I sensed he was also relieved when I blurted out that we had to try.

If I’m being total honest, I have to admit I wondered later on when things were really tough if we’d done her a favor – or would it have been kinder to let her fall asleep and drift away. During those really difficult and brutal moments, I’d remind myself of all the other moments when she was smiling, remembering and seemed happy; no, we made the right choice for her, she would have approved.

The hospital team readied her and then a special ambulance team loaded her and headed out. We followed more leisurely because they warned us that they had settling time once she arrived, more tests and things to work out.

The neurologist confirmed there was a hemorrhage on the right side of her brain. Of any of their solutions, one again being do nothing, the only action she felt fit Mom best – given her comprehensive condition, and the one she recommended was that a small burr hole be drilled into the side of her skull. They would insert a tube to removed and relieve the fluid inside her brain cavity. This is the lay-version, the way I remember it, but I’m sure there were a lot more medical and technical details that swam over my head.

They assured us that they could do this at her bedside. This was the simplest and least invasive procedure. The neurologist had enough time right then before having other procedures on her docket so she proposed our making our decision quickly and she’d fit us in right away. Robert and I again agreed that we needed to give her the best chance she had to recover so they set to work while we waited in the little waiting room.

The idea was for the tube to remain in, draining the fluid for 1-2 days. The goal was to get her back to her current baseline. An 86 year old brain was not expected to return too quickly or as well as a younger brain. But, this was the only viable option.

When we left, we were full of hope and questions and, as for myself, fear. My Mom held a lot of fear during her life and she transferred this fear to her children – me more than my siblings, I think. I was as afraid for how she’d react to her situation as much as I was afraid of the dire consequences if this procedure didn’t work. I did my best to blank out that avenue and concentrated on doing what I could to make her comfortable and reassure her.

We headed back up the next day. There was supposed to be a number we could call for updates but after searching through their brochure I was not able to find it. We couldn’t even find when visiting hours were so we just drove up. We were a bit early so we were asked to wait in their waiting room/lounge. They told us where the vending machines were. My brother’s ex-wife and her Mom came up so when the visiting time finally came, we needed to take turns since only two people at a time were allowed to be with her.

We learned when we arrived that she had ripped the tube out of her skull and she’d kept trying to get up and move around. They had to tether her arms because she would not stay still. She had an attendant with her 24/7, watching and monitoring her activity. The neurologist was not happy that the tube was removed prematurely; it could not be put back in at this point but she was still appeared hopeful – or she presented an upbeat front for our sakes.

Mom spent a full week at their facility. My brother went back to work but I drove up daily and spent as much time with Mom as they allowed. These were very long days filled with a lot of repetition. She ate better there than I’d seen her eat for a while. She also ate things, for example, grits, which we never had eaten before. When I made them at home, they didn’t go over so well.

The day she came home, they spoke with me on the phone before I went up but they were unsure of when she would be released. As soon as I arrived [it was not a short ride] they informed me that she was being released that afternoon. The attendant suggested I could buy her some running clothes for her wear just to get her home since I’d taken the clothes she’d worn there home earlier that week. She didn’t have shoes or a jacket or anything. I drove home, got all her things and drove back.

Over the course of the week, the difference was like night and day from how she was just prior to our ER visit. We were all so ecstatic at the significant change and had high, high hopes for her recovery. The decline in her locomotor activity was a direct result of the pressure that blood clot had been exerting on her brain. We were optimistic that she would recover all her physical capabilities from prior to this incident – which was precipitated by some sort of fall where she had to have struck her head on something. One of those many nights when she’d get back up out of bed and wander about the house without my knowing must have included such a fall.

Just a few weeks before this, we were out in the yard and she was raking; doing all the activities she loved. Our long-term goal was for her to be able to get back to being physically strong enough to walk and do things she loved. For the time being, we were concentrating on keeping her safe and more sedentary giving her head time to heal and her body to get stronger.

The problem was how to achieve this when she was so head strong and anxious to get everything done right away. This turned out to be a big transition in our lives; one which required the steady help from people who knew the road we were on. Fortunately the Hospital protocol included a home follow up for their released patients. The visiting nurse told us she would recommend Hospice.

At that time, I had no idea what that meant but later would be so very grateful for their intervention, their expertise and support. With their steady supervision and some time, her locomotive abilities were back to normal or close to it. However, I mark this as a definite new plateau on the AD front. No doubt, we were beginning a new journey, it would prove to be rocky, difficult, and scary but not without little pockets of sweet, sweet cherished moments – fleeting though they may have been, they were the buoys that kept me renewing my commitment to her each day.

Those of you who are in the bunker right now – be ever vigilant for those rays of sunshine to keep you grounded and remind and reward you for being the love “that” person in your life desperately needs.

Shift and Dissolve

Gradually the days began to transition so day was night and night was day. Sometimes Mom would “go to bed” but within seconds she’d be back up and wandering around her room. She’d spend hours looking at items on her shelves.
A massage therapist friend of mine had begun working on both of us weekly. Mom seemed to really enjoy the work and it was helping alleviate chronic pain in her neck. Kat, my friend, gave me a few CD’s she’d been playing during our sessions and one in particular that Mom really responded to.

I rigged a CD player and speakers in Mom’s bedroom and began playing that CD at bedtime. We did this for quite a while, she loved it. It helped relax her. Each night after the usual goodnight rituals, I’d assure her over and again that the music would shut itself off; it was set to do so. Also I assured her that the music was not too loud for me and that I enjoyed hearing it.

This went on for a while; the music did seem to facilitate her drifting comfortably to sleep. But it was no match for the sun-downing effect that would shortly take over our lives. She would sleep longer and longer into the morning so she’d naturally not be sleepy enough until later and later each night. Frantically, I tried everything I could think of to get her to wake up in the morning and stay away all day so she’d be able to go to bed at a normal or acceptable time at night. Moreover, so that I could hope for some few hours of sleep I could count on.

Along the way, there were nights when we were up all night. At a point during the day, Mom would take a nap but I would, if extremely lucky, maybe eke out an hour or so. It was grueling.

The day’s energy felt like being trapped in a centrifuge or maybe in a zone targeted by a tornado. We seemed to have no power to resist the immense draw of energy pulling us into a frenzied chaos otherwise referred to as daily life. There have been times in my life where I’ve felt an underlying energy draw that was unseen but clearly felt: I knew “something” was imminent but could only keep vigilant watch for what may happen next. That’s how these days into weeks were. The energy was almost tangible.

The week or two before Mom had her major fall – or what must have been a major fall [and not something I will not delve into here] – this flip-flopping of day for night was rampant. But it was not finally adjusted until much later, once the Hospice group came to our aid. So we flailed with this insanity for some time.

Also, Mom’s ability to communicate her thoughts was becoming more and more crippled. Her attempts left me helpless to interpret her disjointed words and phrases. Add to this, she seemed distant. She treated me as though I was a stranger who’d broken into her house and she was angry I was there. She did not recognize me so I was a stranger to her.

It was impossible to get her to eat with any consistency. My constant nagging her to drink more did little to change her consumption so no matter how much energy I invested she still wasn’t drinking enough water. Dehydration only compromised her motor and mental capabilities further. The domino effect in action: dehydration and inconsistent eating also caused her to be horribly constipated – oh, there were whole days spent in the bathroom working through these issues. In my wildest nightmares I never imagined I would deal with such things. I kept reminding myself that she had changed my diapers when I was a baby so, “Shut up and stop being one now!”

At a point, the CD’s peaceful music stopped being of any assistance. She became compulsively obsessed with turning it off, rolling everything into a ball and stuffing it into her closet. Of course she would not turn the CD off properly; she would just unplug it and twirl it all up. Finally, I removed it so it would stop upsetting her. Then she would sit on the edge of her bed gazing at the many titles of books in some of her book shelves. Some nights she’d slip onto the floor investigating the lower shelves and I would have quite a time trying to lift her back up onto her bed. It helped that she was only about 100 lbs. and that her bed was very low but still not an easy task.

All my life she had been a voracious reader. She loved mysteries but also read a myriad of eclectic books. She inspired me and my sister to appreciate and adore reading as she had. Like Mom, I covet the escape, the adventure, the rapture with which a book engages me. Watching her barely able to read the titles, even her own name, was brutally sobering. Her nimble mind which could once skirt a step ahead of the best mystery writers and identify who the killer was well before the big reveal could no longer make sense of a simple sentence. Still, she seemed to maintain a strong connection – bond with those old friends lining her shelves.

Mom used to love it when I’d make popcorn – it was a treat! A friend had given me a three-month Netflix subscription that I kept up. I’d order anything I thought Mom would like. We’d have popcorn and make it a movie night. As with many other cherished activities she gradually became bored; unable to follow the plot or keep the characters straight. The last movie sat unopened for months before I shipped it back and ended my subscription.

One night neither of us had eaten well at dinner so I made some popcorn. Since she used to brighten when I made it I thought she might enjoy it even without a movie. As usual, I placed the big bowl of popcorn between us on the table, giving us each a smaller bowl. This way we could salt our popcorn the way we liked it. My plan backfired. Instead she seemed annoyed. I ate a little while she sat there sort of fuming. Finally, she grabbed the big bowl, placed it in her lap and salted the entire contents while twirling her hand through it mixing it up. She picked out pieces, bit off a little and threw back anything she didn’t like. She didn’t like much but didn’t want this interloper, me, to steal what was hers.

Her manner implied that I was a party crasher: not invited and not welcome. I cleaned up some and went off to get ready for bed. She ended up sitting at the table until 6AM the next morning. This was one of many nights she stayed up all night. I kept coming back out to check on her but would find her leafing through old medical bills, junk mail and catalogues.

In between my trips out to the dining room to check on her, I’d read or doze in my room because I was definitely not welcome to share her space so I left her alone. Of course I worried that she could slip out the door or throw a cat out the door or, well, my fertile and tired brain thought up many scary scenarios.

This was also one of the first nights when I locked my bedroom door when I felt I had to nap a little – doing so made me feel wretched. This was my Mom! And, I didn’t feel safe. Could I trust that she would be the loving person I knew my Mom was or would she decide she needed to defend herself against me – the stranger who’d broken into her home?

On my last trip out to the dining room at 6AM she complained of being cold. Too bad she wasn’t in her room where I’d set the additional heater so it was toasty warm since about 10PM the night before! Finally, she agreed to head back to her room. When I started to get her settled she seemed a little apprehensive to be left alone in this unfamiliar room – her bedroom of forty-some years. She spoke at length in those fragmented phrases. Sitting beside her on her bed I struggled to make sense but could only figure she just needed to feel connected to someone – even if it was me – a stranger today.

She began pointing at pictures on her shelves and dresser. One was of her and a dear friend, Ginger, when they were in the Marine Corps during WWII. Next to it was one of her and her sister at that same time. In both images they are in uniform. She and her sister had joined the Marines together, Mom lying as she was a bit too young. She never told me how she pulled that off but only that she wanted to be with her sister, they were very close. She was pointing at her sister’s face and she turned to me and said, “That’s Deb, Debora!” She said it with such love, such affection. My Aunt’s name is Dominga or Sunnie, as it was Americanized – I am Debora.

And so it began: over the course of the last year or more of her life, I’d most often be her sister or her mom but sometimes her daughter. Yes, I continued to also be a stranger she sometimes liked and sometimes not. Almost two years after her passing and here I am still replaying some of those moments; wondering if I could or should have made different choices. Like Lady Macbeth said, “What’s done cannot be undone.” But I continue to try and make sense of it all. Why did this have to happen to my Mom, who’d had a not so easy life? Why did she need to have this experience?

The years Mom and I spent together, struggling together against this insipid Alzheimer’s – facilitated a keener sensibility in me. Deeper even than when I worked in the theatre. Of course years lived and life experiences have also had their influence. As an actor, the roles I gravitated toward and in which I was usually cast were ones requiring an emotionally fluid vulnerability. My awareness and ability to analyze the emotional and psychological make-up of a character deepened my understanding of us human types. One cannot be an actor, not successfully, without pretty much psychoanalyzing oneself along the way. After all the years I believed I was pretty grounded.

But today I sense that I was only scratching the surface before: NOW I am more grounded, more authentic, if you will. Is this simply the culmination of years lived and my finally growing up? Maybe! Or maybe it’s because the experience with my Mom so profoundly affected me that now I am “marked.”

In the play, “Talking With,” there are ten monologues or acts. One is entitled, “Marks.” It is about a woman who had a traumatic experience culminating with her face being cut and scarred. This moment changed her boring beige life. When we, the audience, meet her we see a woman covered in tattoos representing additional life-events. Only her scarred cheek is left without tattoos so the initial “mark” is visible. Her revelation is that she believes people should wear their experiences on their skin; so she does.

I am not running out to get a tat any time soon but I empathize with the character’s point of view. Over the course of our lives there are those poignant experiences that touch us so deeply, so overwhelmingly that we are forever changed. These significant emotional events can make one better and stronger or crush one’s spirit. It’s a choice.

My choice is to do all I can to develop — evolve into the most caring, giving, sensitive human being I can possibly be. If we all keep sending our collective positive energy into the Universe, surely we will find a way to eradicate Alzheimer’s disease and much more.

My prayer is that I was not given this opportunity to walk beside her on her path; watch her struggle, share her pain and square off with a faceless beast only to be later abandoned in its cage. Through these years and, even before this time, I have often felt as though my life was on hold. I was waiting to live.

My analogy is that my life was like a glass of water. But the glass had a crack in it. The water seeped slowly away while I frantically worked at figuring out what I was supposed to do. Notice this is phrased in the past tense. The intense period with Mom made me do some soul searching. Who am I and what do I want to do with what is left of my life?

Slowly, I am beginning to feel more directed. My life has been filled with objectives but they were more outer-directed. Now, the objectives are coming from within. I don’t have the answers yet but I am patiently waiting. Everything is the way it is supposed to be when it is supposed to be. And so it goes.

If I can stop one heart from breaking,
I shall not live in vain;
If I can ease one life the aching,
Or cool one pain,
Or help one fainting robin
Unto his nest again,
I shall not live in vain.
Emily Dickinson

Little White Lies

By 2011 we were six years into the diagnosis. Days had been difficult off and on before this time but somewhere in the beginning of 2011; things seemed to spiral.  It felt as though I was trapped in a broken elevator that was no longer capable of reaching the higher floors.  From time to time, the gears would grind and slip causing us to fall to a lower floor with a reverberating thud.  I felt trapped in that little elevator car, helpless to fix the broken gears — Mom’s brain.

If I could visualize her brain, I’d say it was like looking at a city’s light grid; periodically and unannounced whole groups of lights [neighborhoods] would go black causing that sense of being slammed to the floor below. These blackouts sometimes coincided with an increasingly larger event or altercation between Mom and me.

This isn’t a conversation I’ve had with any other caregivers so I have no way to know if anyone else feels this way. She was my Mom, I wasn’t thinking about her in an objective sense.  We don’t always see the nuances of change in those we are very close to.  Not always, but much of the time, she seemed to know me.  

However, soon enough, it began to dawn on me that more often she had no idea who I was. In the earlier time period when I’d walk into the room she’d ask me when did I get back, you’ve been gone so long.  In reality I’d been in my room for a short while or had just gone to the bathroom and come back out.  This conversation could be repeated a bunch of times within a twenty minute period.  Some days it could be the conversation almost all day.  She often asked me where “Deb” was.  When I’d tell her, “I’m Deb.  I’m your daughter,” it didn’t match whatever she was expecting.  She appeared unresolved and would repeat her questions.

Of course I understood she was having difficulty remembering, difficulty knowing who I was or who anyone was. She had difficulty knowing who she was.  But, on some other level I was constantly baffled with it all.  It was probably her grasping to remember who she was that caused her to begin reciting her entire name as she must have done for her parents when she was a child: Maria Alfonso Pernia Rodrigues Fresno Raton!  She’d say it with a flourish almost over-pronouncing the Spanish accents.  There were little scraps of paper here and there where she’d write her name.  There’s still a little paper taped to the wall of her bedroom with her name and those of her family — her sister and brothers.

There was a period when she persistently asked where her sister and brothers were. When the news came that her sister had passed, she was, almost inconsolable.  Soon this information drifted out of her present-day memory and she asked again where her sister was and when she would see her.  She often asked about her brother Mike too.  She’d not seen him since the end of WWII.  I don’t know why.

It became clear fairly quickly that the kindest thing to do would be to lie to her; make up stories about where her sister was – where her family was. I’d invent details about how her sister called and she was at home in Virginia but she’d come and visit next week.  Next week never came but this pacified her in the moment.  Those white lies became useful tools to keep her from being tortured with more distress than she was already experiencing.

It is not part of my persona to evade or lie about anything. The truth has always been a friend so it was not easy or comfortable fabricating stories that would, hopefully, calm her.  It was the most compassionate thing I could think of and the only action that had a positive impact.  As the AD progressed she stopped asking; she saw her sister in my face – unless I was her mom in that moment.  But once in a while, I was thrilled when she recognized me as her daughter.  It was confusing for us all.

Her upset would manifest as agitation. Agitated is not a word I was really acquainted with to any degree prior to this period but it was one I would come to understand all too well.  During her last year or so, Mom was agitated by almost everything and her reaction could grow into a huge issue in a blink.  She would sometimes become agitated immediately upon awakening and seem quite panicked.  Immediately the calm-down drug would have to be used.  It about broke my heart to start the day in this way.  But the alternative was not good – not for Mom and not for anyone around her.

The nurse instructed me to anticipate mood shifts. This turned out to be easier said than done.  Studying her every nuance became my obsession.  My ability to consistently catch the wave before it overtook us was hit or miss.  Sometimes I would recognize it in time but not make the decision quickly enough.

During that time and since, I’ve spent hours upon hours thinking about why it was so difficult to identify the impending agitation so that the calm-down pill could be given in enough time for it to ward off the ensuing storm. My conclusion, finally, is that as the family of an alcoholic, our first and foremost job was to hide that we were.  We feigned, rather convincingly I think, that we weren’t living a normal life.  What is normal?  We were expert feeling stuffers – with a great big, “Everything is Fine” Band-Aid ready for any problem that might arise.  We slapped on a smile and never let on that anything was amiss.

Mom’s years of hiding her feelings proved how brilliant she was at doing this. Even for someone who was vigilantly watching for behavioral cracks, there was often a seamless and instantaneous mood shift.  It reminded me of a scene in the film The Nun’s Story, where the young nun, played by Audrey Hepburn, is attending the inmates of an insane asylum.  The scene is between the nun and a very cunning woman definitely not in the same zip code as the rest of us.  She is smiling and rather pleasant and suddenly scary as hell in a flash.  That’s just how I liken some of Mom and my more explosive and difficult events.  All would be ordinary [or seemingly so] until it wasn’t anymore.  These were moments I didn’t really recognize her and would have to remind myself she was my mom!

The other part of the problem with not catching the impending storm was definitely me. There was a constant fight inside me about when and how much medication Mom should have.  Every time I lifted that bottle the weight of that decision, that little pill, laid heavy on my chest.  Usually, the side-effects included Mom taking a long nap.  Surely there is more to life than sleeping through it.  I remember a conversation with my brother about this in the later stages.  He shrugged and said, “She’s 87!”  Still, even though she didn’t seem to remember from moment to moment, I wanted the last part of her life to be filled with warmth, love and happiness – busy doing anything that might make her happy.  Life is in the doing, in the sharing.

Finding ways to keep her calm was a fatiguing struggle and, ultimately, the medications became the key to providing her with the peace she needed. Slowly and reluctantly I gave in.  The energy she exerted being agitated took a huge toll on her little body.  The doctor described what was going on: her mind, which from her point of reference was quite young – the point to which she’d regressed – would command her fragile older body to do tasks.  She had strong will so would not give in but would continue to try to achieve her directives.

The nurse had tried to ease my mind about the array of drugs necessary to keep her from being distressed by asking, “If she was in physical pain, would you not give her something to ease that pain? Of course you would.  She is in mental pain and needs something to help ease that suffering.”  Nevertheless, I wrestled with the decision each time it came up.  Some days she could take one of those magic pills four times.  Near the very last of her life, she slept a lot.

The little white lies subsided for the most part; but I did do my best to impersonate her sister and mom — the roles in which she most often cast me. And I was fine with that.  I knew she loved them and through them she loved me even if she didn’t remember me specifically in that moment.  When I looked in her eyes, I saw love and that’s all that mattered.  Love transcends all else.

Never Again – Not in This Lifetime!

There were many activities over the course of Mom’s – well, here I sit pondering what to call this beast.  Is Alzheimer’s an illness?  But to call it an illness makes it sound like it is the Measles, Flu, or Chicken Pox – something one endures for a while and before going back to enjoying a life of wellness.  For the afflicted person, there is no going back; only going on.

If I’d only been able to be more proactive instead of reactive, perhaps I’d have fared better.  It always seemed as though I was running full-tilt-boogey trying to stop an out of control train that was spiraling down an icy track.  I felt as though I was always flailing, scrambling, out of breath and behind.  The reality of this disease, which is a better word than illness, is that it manifests in an individual manner.  No two people will have the exact experience but they may very well share similarities.  Now, I’m certainly no expert; the previous statements are based on some of my reading.  It makes sense.  We all bring our unique pasts to the game.

Sidebar over, back to what I intended to relate: there were so many activities Mom and I used to share that became impossible as time went on.  Some naturally slipped away: the Netflix movies we enjoyed, TV shows, discussing some of the same mysteries we read, working crossword puzzles, Yahtzee – she loved Yahtzee, working in the yard, taking care of our cats and so many more things that just invisibly ended with no definitive event.  Then there were activities, like going food shopping, which became major trials before finally becoming impossible for us to undertake together.

The last time we did go food shopping together was certainly  a significant emotional event for me.  A lump comes into my throat as I think about it now, a few years later.  What I didn’t know that day was that what transpired was a sneak preview, a mere hint of what was coming; it wasn’t pretty.

If only [oh those proverbial words] I’d had the presence of mind to abort the outing and just redirected our energy to something else that day….  The flags were flying but I just kept pushing to tick that task off the list.  When every day is a struggle to accomplish anything; you begin grasping at any opportunity no matter how small.

Probably I should frame this with more surrounding information.  During these days, unbeknownst to me, Mom was slipping into the sun downing syndrome.  That was not a term I’d ever heard at that time.  But my observation was that she would stay up until all hours at night until I’d finally stagger off to bed too tired to keep trying to get her to bed.  After sleeping fitfully for a few hours, I’d be up early in the morning taking care of the cats and whatever else needed tending to until I reasoned it was time to begin the struggle to coax her out of bed.  This might go on for hours.  Sometimes it was 1pm or so before I could get her to eat breakfast.

We were both exhausted. Her medication schedule was all screwed up.  My frustration was mounting with feelings of isolation, the inability to control any part of my life and the struggle to achieve even the simplest of tasks; some fundamentally crucial for our day-to-day existence – like food shopping.

My Dad, as I believe I may have already mentioned in earlier posts, had spent his life in the military and Mom, his widow, was entitled to certain privileges.  One of the remaining privileges was shopping at both the Commissary and Post Exchange on the military base.  Just like any store, one had to watch pricing but overall, it was somewhat less expensive to purchase groceries on base.  More importantly, it was extremely convenient at less than 2 miles from our house.

Mom had a heart condition and was not supposed to lift more than 10 pounds.  Her doctor wrote a note so I could obtain an assistance card which allowed me to accompany her to the commissary and help her shop.  This had been in place for some few years prior to the AD onset.

Some of the shopping trips leading up to this particular day had been uncomfortable; Mom acting oddly while we were there.  I attributed this behavior to the strong fluorescent lighting and the way the sound reverberated in that huge space.  No doubt, I thought, these things bothered her cataract-corrected vision and hearing aid respectively.  She had previously made non-descript complaints during our visits which I couldn’t really pin to anything tangible.

This day, we were getting ready to leave; we were both dressed and ready to go with our list in hand.  We needed her military ID card to gain access to the base, since 9-11 the base which had previously been open, was now closed.  No one was [and it’s still this way] allowed access without proper identification which must be shown to guards at the check points.  I went to her room to get her purse and found her wallet missing.  This became a recurring issue until I finally removed important documents or items from her possession and placed them in a secure spot where they could be found as needed.

But, this fateful day, her empty purse was all I found.  Tick-tock, tick-tock, is all I could think as I pulled my heart up out of my shoes.  The time was speeding away and I had no idea where she had hidden her ID card or her check card so we could pay for the groceries.  We both had a check card, one for each of us, in each our names for our joint account.  This had been one of the things Mom, when she first realized she had AD, wanted taken care of so we did – Thank God!  However, to check out at the commissary, the name on the card had to match the name on the ID card so my check card could not be used.

Therefore it was imperative to find both of her cards but where oh where had she hidden them?  Mom would go through moments or longer periods of time in the day when she did not know who I was and she believed that I was there to rob her.  During this early period of her AD, I really had no idea that’s what was going on in her mind.  But, looking back, I now understand why she would sometimes want me to leave.  When I’d try to explain who I was and that I lived there; she usually did not believe me.  Once she made me show her my driver’s license and she still would not believe me.  

In trying to locate where she’d put her things, I looked through all the places I could think of.  Finally, after an extensive search, I found her wallet but no cards.  The wallet only contained a few pictures and business cards.  We were both pretty stressed trying to find them and she began whining and wailing over the situation.  All I could do was to keep reassuring her that they were somewhere in the house and we would find them which, ultimately, I did.  They were tucked in a drawer under the paper lining in the drawer.  Phew!  We’d lost a good bit of time but could still go shopping.  My bad!

She immediately demanded to have possession of the cards telling me that I could not have them because I was not military, only military people could have an ID card.  The fact that she wasn’t technically military either eluded her.  She was considered my Dad’s dependent.  But, I shut my mouth.

This is the point at which I should have thought, stop while you’re ahead.  We could shop tomorrow.  But, oh, no, we just sailed on to the commissary.

She was narky but we managed to get to the commissary without further incident and began the process.  However, soon enough she was acting even more oddly than ever.  First, she took the list away from me.  She was beyond annoyed that I was with her.  Any suggestion I offered was quickly put down so I carefully followed her like a well-mannered servant.

We wound our way up and down aisles, finally finding ourselves in the cat food area.  Surprisingly she allowed me to pick out cat food and litter but not the full amount we really needed.  I tried to be as quiet and compliant as I could so as not to inflame whatever what going on.

Very shortly she began complaining that she didn’t feel well, she was light-headed.  I suggested she sit and rest; I could go ahead and finish collecting the groceries and then we’d go through the check out when she felt better.  NO!

We pressed on and soon she began saying that she had been poisoned, that I had poisoned the coffee she had before we left.  She became riveted on her conclusion and got herself very worked up over it.  She became loud and abusive toward me commenting loudly about how I’d poisoned her coffee.  By now we were up near the dairy area where the store had placed a large display filled with packages of Oreo cookies.  She gave it a good sound kick!  Heads turned; people were beginning to take notice.  A startled little boy looked with big eyes in my direction.

Whipping out my cell phone I quickly dialed my brother who I believed was working on base for a few hours, as luck would have it.  But, my call went to voice mail – of course.  I called his [grown] son and asked if he knew where his Dad was hoping he was with him.  But he was working over in PA.  This was Saturday so I’d hoped one of them might be available.  Also because it was the weekend, the commissary was pretty crowded – oh happy day!  More people were now glancing as Mom continued being even more provocative giving the display another whack.

I started to call my brother again but my phone rang – he was returning my call after listening to my pitiful message starting with “HELP!”  I briefed him about how I’d poisoning our Mother while he suppressed a laugh – easy for him – and I gave Mom my phone.  She was very distrustful of me.  She snatched the phone and walked away so I couldn’t make out what she was saying.  Before she moved out of earshot, I heard her beginning an angry tirade.  Ultimately he was able to get her to listen.  He was the one person who was almost always able to calm her.

While they spoke, I perched on the edge of that Oreo display feeling emotionally congested and pondering options.  First I thought about putting everything in the cart back on the shelves.  Or, we were close to finishing our list; maybe I could find those last few items real fast.  There was always the possibility of leaving the cart to the poor store personnel who’d be stuck with the odious task of returning all the items to their rightful places.

But the thought I pondered longest and hardest; the one I was having difficulty letting go and the one with the most appeal was to give into an almost insuppressible feeling to simply walk away.  In my delicious fantasy I saw myself leaving, getting into the car and driving and driving and driving far away.  I would just leave her there and go somewhere quiet and peaceful.

I took a deep breath and checked to see where she was and what she was doing.  She was moving back toward me and offering me the phone.  The look on her face had changed.  My brother had been successful this time and she understood now vaguely who I was.  By the look on her face it was evident she felt embarrassed, upset with herself.  How that look broke my heart!  She handed me the phone and he and I arranged that when we got home, I’d give him a call and he’d stop by.

She took over my perch on the display while I finished gathering the few things left on our list.  We went through checkout without further issues and arrived home and back to our warped normal.  He stopped by later for a visit and the incident was behind us.

But this episode forced me to obtain documentation necessary for me to have proper credentials to go on the base alone.  I would shop for her without her being required to be with me.  She could not be left alone but usually a neighbor would stay with her.  Never again would we go food shopping together.

My first solo trip was full of sadness; my heart heavy filled with the memories of all our trips there together: watching Mom select the most perfect broccoli crowns, our inane chatter as we filled our cart or me patiently waiting while she stopped to speak with people she knew.  Yes, she had worked in this commissary for many years and knew lots of the people — those she’d worked with as well as customers.  They would stop me and ask where she was. They’d tell me they missed her too.  But that chapter was now closed.

This trip marked an ending and a beginning.  The shift had begun.  More and more from then on we did less as equal participants.  My caregiver role grew until our roles reversed: once her child, now her parent.  

 

The Shape of Things to Come

There were a host of little signs that things were not as they used to be. But, very like a friend of mine had shared regarding his heart condition: the changes are so imperceptible and spread over such a long time one doesn’t notice. We simply continue to make adjustments we aren’t cognizant of making. He finally had his “ah-ha moment” when he realized he couldn’t walk across the room – he was too winded. He sought medical assistance.

It was somewhat like this for Mom too. Of course it was not her heart precipitating the behavior but the behavior ultimately did have an impact on her heart. But in the early stages, there is no light switch; there is no significant moment that you can point to and say, “Right there is where it began.” Like the fog in Carl Sandburg’s poem, “it comes on little cat feet.” It quietly steals into your life right in front of your nose and keeps taking up more and more space until you finally must notice. I kept “moving over” to accommodate an increasingly negative Mom. But, I attributed her behavior to her being alone much of the day, to her just being more set in her ways and becoming less flexible to change.

One of the things about Mom that I had always marveled at was her capacity to bear pain or circumstances. She always demonstrated a stoic tolerance — almost super-human. As she advanced, she lost ALL capacity to bear the tiniest inconvenience. In fact it seemed a melodramatic overreaction to everything that happened to her was her only reaction. There was no perspective – she was very like the little boy who cried wolf – I had no idea what was important and merited my complete and instant attention or what was just another case of her overreaction to some minor incident. This increasingly was of serious concern. What if something really important did happen? I might just ignore it. One becomes numb to a person who continually causes undue pandemonium over nothing.

Mom had lived, in many respects, a hard life; surely the time spent with my Dad was very challenging for her and set her outlook on the world. I reasoned she was justifiably tired of resolving problems. Recently events have led me to feeling as though I’d hit my wall. As these events do impact much of the last year or so of my life with my Mom, I will, no doubt, be addressing this one of these days in one of these posts. For now, believe me when I say how I certainly now better understand how intolerable that last straw really is. Maybe Mom hit her wall.

Even with a diagnosis, nuances in personality were not expected and so soon. She was often agitated, annoyed, irritated, confused, secretive, suspicious and hyper-sensitive. This is not a finite list. She could easily let out a blood-curdling scream over something rather insignificant.

A case in point was one night after we’d made some soup. We liked to make a big batch and then freeze it in portions so we could enjoy it for lunches when we needed something hot on a cold day. This particular night, we’d ladled the soup into the containers but it was still too hot to seal and place in the freezer. They were neatly lined up on the kitchen counter; their lids just resting on them.

I was in my room working on printing some images for a client and Mom had been feeding the cats. She had pitter-pattered in and out of my room a dizzying number of times bringing bowls and taking them away again. She disappeared into the kitchen for the umpteenth time when suddenly, there was that blood-curdling scream that I was sure could be heard for miles around. My heart lurched into my throat as I sprang up from my chair and flew into the kitchen.

Elvis, one of our old head-strong kitties, had jumped up onto the counter. He probably thought the containers were more bowls of food or he wanted to get to the other side of the sink where there is an extra cup of water we keep there for the kitties. Who knows what his intent was but in his leap he managed to slide into a couple of the containers of soup and sail them off the counter. They had bombed and splattered all over the floor and all over Mom. There is olive oil in that soup!

When I arrived in the kitchen, Mom was whimpering, looking at the mess. I just took a big breath and told her it wasn’t the end of the world – “it’s just soup.” Living so close to an air base, I half expected the nose of a plane had landed in our living room. I suggested that she go and clean herself up while I cleaned the floor. She did go clean up some and when she returned she was different. She was apologetic, embarrassed maybe and insisted she finish what was left to clean but did allow that I could help her. That olive oil did command a good deal of attention!

This was in the early days when she vacillated between worlds: her normal life and the dementia warped nightmare she slipped into from time to time. She still had the capacity to understand that what happened wasn’t “normal.” When she came back into the kitchen she was weepy again and thanked me so very many times. Thinking of her feeling so lost and out of control of her emotions caused mine to well up. Besides the memories, she lost the emotional relationship to events and those memories. Her reactions were unpredictable and often over-the-top in a negative, angry way or could be deeply emotionally cathartic.

She continued to thank me as she hugged me over and over. Quietly I told her, “You can’t do that. I thought you were being killed with an ax. You can only scream like that if your leg falls off or your eyeball rolls down the hallway.” This made her laugh and the tears went away.

That night she confessed that she wasn’t herself; she didn’t remember things. She couldn’t remember words when she tried to make a sentence. When I have those same issues I choke up and wonder if I should be on those meds she so easily cast aside. But the last time I brought this to the doctor’s attention he waived it off and said that I had normal forgetfulness. Still, I wonder….

Before we went to bed that night, she hugged me tight, so tight I thought she might crack a rib. She told me she didn’t know what she’d do without me. I think she was afraid I would leave her. Lord knows over the course of the next six years, when I felt pressed up against that proverbial wall, it occurred to me that maybe I should find a “nice nursing home.” Then I’d get that “vision” in my head of wheel chairs lined up in some hallway with drugged old people, heads drooping onto their chests and I would set my jaw and resolve to try harder. I knew I could get through the night and tomorrow — after that, I’ll worry about it then I’d think.

Besides, I’d made a pact with my Dad when I was 5 or 6. He asked me what I was going to do when I grew up. I told him that I was going to work around the house. The Universe is amazing, isn’t it? Little did my little child-self know my vow to my Dad would be exactly what would happen.