GROSSLY FRAGILE

Several months back I reached a point in my caregiving at which I felt broken. My mantra became “I don’t care.” And I didn’t. I suddenly didn’t care about being super nice to other people who were pissing me off. I didn’t care what I wore or how my hair looked. I developed a candidness in my conversations with others, not sugar-coating, not always smiling, not trying to disguise my unhappiness. In short, I became a bit of a bitch. Telemarketers and survey-takers received resounding hang-ups without even so much as a “not interested, thank you.” (yes, Mom still has a land line) Solicitors and proselytizers  who ignored my prominently displayed sign on the door telling them in essence to “go away” got a sternly delivered reading lesson. And never came back. Yay. In short, this is one of the positives of my experience as a caregiver. I no longer waste time being wishy-washy, no longer waste energy on caring so much about the other person’s feelings. I just can’t. It’s just not there anymore.

Last Friday night, the day after Thanksgiving, I broke again. Mom and I were visiting relatives in Boston, a gift from my brother, who was understandably tired of the yearly, hurried trek to Cleveland in bad weather. For a change, Mom and I went there and stayed an entire week. I was treated to time with all of my grandchildren, and most of my family members. Of course, Mom was too, and she enjoyed her lucid moments. The trip was hard on her, though. The household was chaotic, with three active children under the age of five. Add to that the usual energy my family of geniuses typically generates and one can understand why she probably began to feel overwhelmed. I knew something was brewing that afternoon. She kept making asides to me, asking who this person and that person was. Accusing the children of hurting each other, of misbehaving. Forgetting where she was, and obsessing about her purse and her belongings that were in a suitcase in another room.

Dinner would be late, the kids were being fed early, so I snuck Mom in with them at the table, intending to give her a meal and then try to get her to an early bed. She was worn out and, I sensed, at a breaking point. I didn’t make it. As I was helping her up from the table and suggesting bedtime, she exploded at me. She screamed that I was pulling at her legs and hurting her. More vitriol spilled from her mouth, but I don’t remember any of it after that, just that it hurt, a lot. Overwhelmed myself, tired after a trying week and frustrated that I hadn’t been able to enjoy the visit as much as I wanted, I was in shock. I dropped her hands and said, “Get yourself ready for bed, then,” and left the room. I went into the bathroom, closed the door, and cried harder than I have in a long time. I wanted to die, I wanted her to die. I hated my mother. I said a prayer asking God to take her in her sleep that night. Or me.

Eventually, my daughters found a way to get her up and to the bathroom. She was crying, I was crying, my daughters were crying. She didn’t know who they were, and I doubt she knew who I was. I managed to get her ready and into bed, but I had no feeling. I was angry at her. Somewhere in the back of my mind I knew I shouldn’t be. It wasn’t her. But it was. That’s the tough part about caring for someone you know well, a spouse or a parent, or sibling. They are who they always were, the good and the bad. The disease doesn’t change that. Everything I always disliked about my mom came out that night.

Well, we’re home, and friends again. It took a few days for me to regain my patience with her, but something’s changed. I look at her differently. I’m scared. I am, as Mom wrote many years ago on a box of hand-painted china, “grossly fragile.”

Advertisements

SATURDAY MORNING

Mom got up early. I heard suspicious noises starting at about 5:00 and denied them for an hour before finally getting up myself. Usually she sleeps, or at least stays in bed until I get her up, so I knew something was not normal. I walked down the hall and saw her sitting at the kitchen table, downstairs, in her robe and munching on a fortune cookie. I immediately backed up and went into her bedroom to do some damage control. Sure enough, there were soiled clothes hanging from every available knob or chair back, some she hadn’t even worn, as if she got the items out of drawers and the closet to add to the fray. Her bed was not in need of changing, however. Long ago I discovered a product that adheres to the sheet that effectively protects the sheets and mattress about 95% of the time.

Long, gross story short, Mom had not changed her Depends and required two baths to get adequately clean. I have started two loads of laundry, done a thorough cleaning and disinfecting of the bathroom, wiped down her room (well, that’s a lie-I just thought of that and need to remember to do it), made some breakfast and let the cat out and in once. During this time I experienced a few mishaps, some painful, some just annoying, that made me immediately wonder if God hates me, if there even is a God, and if not then someone must hate me.

So, forgive me. Forgive me for not feeling the blessing some people blithely point out that I’m here to take care of Mom, that I get to spend time with her that others are missing out on. Forgive me for the resentment that sneaks in momentarily, towards those others who would help if they were here but are not. Forgive me for wishing I was not here, either. Forgive me for being self-centered and failing to feel my Mom’s pain and loss. And forgive me for hurling the shampoo bottle against the wall after it fell into the tub the third time (and for the four-letter words that poured from my mouth).

I am not a saint, unless a saint can be frustrated, have hateful thoughts, curse and hurl shampoo bottles, feel resentment, and fail to feel blessed. I am human, and feeling it more than ever this morning.

TRUTH

Revelation this morning: this is not working, and I have to stop telling people it is. “This” meaning this situation, my schedule, my responsibilities, my trying to be all things to all people in all my various lives, my remembering, solving, keeping track, fixing and facilitating absolutely everything. Some days it is like that. I regret answering concerned friends’ and relatives’ inquiries by saying, “Things are going okay.” Because they’re not. I live every moment on a precipice of failure. Will Mom fall down the stairs today, while I’m standing right there and allowing my attention to be distracted for half a second? Will I forget to pay an important bill, even though I have developed a fail-safe (haha) method of keeping track, of both my Mom’s and my own household’s bills? Will my cat get hit by a car? What if I get injured or ill–who will fill in, take care of all that I take care of, and will it compromise my ability to function in the one paying job I have as church organist? What about the rash Mom has developed on her back–is it shingles? Should I take her to the doctor? Will I make the wrong decision and wait too long, or choose the wrong course of action? Is it something I did that caused the rash–didn’t rinse her thoroughly enough in her bath, or change of laundry detergent?

These things and more racket through my brain on the drive to and from Mom’s, in the middle of the night when I wake up and can’t regain sleep. What have I forgotten, I wonder as I ping-pong from house to house? Do I have my contact case, my glasses, clean clothes, a coat in case it gets cold, decent shoes for church? These are not the normal, ordinary worries of a normal, ordinary life. Not to discount the fact that everyone’s life has its own set of complications. But most of those complications, I assume, are confined to one life, not the dozen it seems I am living right now.

I have tried different schedules of respite care, carefully budgeting so that Mom doesn’t run out of money too soon. I try relaxation techniques, some of which don’t involve alcohol, oddly enough. haha I give myself treats–a lunch out by myself, a walk in the park, a good foot soak in the tub, a new article of clothing. The effects are short-lived and make me yearn for more.

However, within this rant lies the deepest and most drastic of all my worries–Mom. Even after a year of being completely responsible for her well-being, day to day and long term, I still lack confidence in my choices and actions. It is all me, and I am not known for my great rate of success in life decisions. I worry that I have facilitated her decline by supervising and directing too much. I worry about her health and that I’ve been lazy in her nutrition, for instance. I probably should have taken the time and initiative to research a healthier diet, organic alternatives, etc. But I often feel I take the easy way out and once in a while throw a Lean Cuisine into the microwave for her dinner.

Perhaps my anxiety in part stems from my early years as a single parent. I had no idea what I was doing and I made some mistakes on a grand scale. Being the only parent, I couldn’t share the blame with anyone. I had no one to share either the worries or the celebrations of parenthood in later years, after my children miraculously survived my haphazard parenting. Some people have said I raised three fantastic kids. I say they are fantastic in spite of me. So I wonder about my Mom, now in the same situation as those children. Being raised by an inept, bumbling boob, alone and floundering in unknown territory. No one to blame but myself. Sure, I get all the credit when the results are good, but that only reinforces the fact that I should accept all the blame when the results are not so good.

I had an image the other day of the future, at Mom’s funeral (assuming I outlive her which, as the days pass, seems to be less and less a probability). It was a dark, sad, and angry image. Whatever her end was in that image, I had the overwhelming sense that it had been a result of my failings. But, you know, within the darkness of that image was another overwhelming sense that Mom and I had fought a war together. Mother and daughter became sisters in that moment, soldiers side by side in battle. That is the gift I will bring away from this whole mess. For however many years we have together, the war will be ours and only ours. No one else in my family has that, will ever have that, or will ever truly understand it. This is my comfort during my self-indulgent moments of resentment and envy. So I am left with the contradiction of feeling of being, at the same time, both cursed and lucky.

TSCHAIKOVSKY’S REVENGE

Where, you might be asking yourself, did that title come from? Well, as anyone who has dealt with an Alzheimer’s patient would know, they say the darnedest things. My title today is something Mom came up with yesterday while we were listening to music. The piece was the Tschaikovsky Violin Concerto, a piece I know her father must have worked on many times while she was a child. I asked her about it, if Granddaddy ever played this concerto. She replied that he must have, but being a child, she didn’t pay very close attention.

As the piece progressed, I noticed Mom tapping her feet, moving her fingers, remembering. Several times she asked me what was playing. She would deny ever having heard it before, but in the same breath hum along with the soloist, note for note, embellishment for embellishment. Finally, as the piece came to its end, I looked up from my crossword puzzle and saw Mom with her head back, eyes closed, face in that all-too-familiar grimace brought on by the pain and pleasure of something purely beautiful. Her goosebumps were contagious. At that moment, my Mom was inside out. Everything her disease had been working so hard to hide, to bury inside a maze of missed connections and burnt out cells, was exposed. She was herself. For a few moments. Then it was over. The concerto ended and we sighed in unison, me exclaiming how beautiful that was. And Mom leaned over the table and asked, “What was that called? Tschaikovsky’s Revenge?”

I laughed, made a joke. “Maybe a violinist in the midst of working on such a difficult piece would call it that.” She kind of laughed. Kind of, because she didn’t really know what she had said. Her mind probably sent out the words “violin concerto,” and they came out “revenge.” So was it mean of me to laugh? Was it insensitive to make a joke? All I know is, if I hadn’t laughed and joked, I would have cried. The moment of magic ended with that bang, that lapse, and my mind was sending out the command to weep, but my heart said laugh, or I’ll break.

JAM SESSION

Tonight I’m taking the easy way out. I realized I’d fallen behind in posting to this blog, and I really don’t want to let it drop, so I dug up the following poem. It was written several months ago, shortly after I started playing duets with Mom. She and I are both pianists (both organists, as well). Because the holidays were approaching, last Fall I decided to experiment with some easy duets Mom and I could play for the family. I guess I shouldn’t have been surprised when she sat down, looked at the music, and played as if she had nothing going on with her brain. She could sightread, keep time, catch my mistakes, follow the musical markings and, when necessary, improvise. I noticed this last when she would lose her place, maybe look at the wrong page or skip a line. She would keep going, making it up as went along. I think sometimes she just didn’t like her part and composed something a little more interesting!

That was almost a whole year ago. She isn’t quite as facile at the keyboard. She often can’t make sense of printed music and spends a lot of time arranging and rearranging the music on the piano desk. I know this is from her old habit, any musician’s habit of preparing–make sure you have all the pages, that they are in the right order and right side up (this is not a joke, because it happened to me once when I failed to prepare!), dog-ear corners to make page turning easier, check repeats, cuts, and any other penciled-in changes. Finally Mom will stop fiddling with the music and start to play. Beautifully. More often now than not, it’s not what is on the page. Sometimes it’s just seemingly aimless meandering up and down the keys. But whatever she plays, she plays with feeling, exhibiting her innate musicianship and talent, neither one giving up without a fight.

I shy away from playing duets lately. I am still struggling with my impatience and anger, though not with Mom. I am angry and impatient with this disease that’s taken so much from her and from me, from her entire world, and is in the process of chipping away at the one thing upon which her entire life and identity have been built–music. Unfortunately, I can only go so far before I catch myself directing these negative feelings at her, so I stop. “I’m tired,” I say. “I’m going to take a break. But you go ahead and play some more if you want.” And she always does.

JAM SESSION

When you can’t see the notes,
or they don’t make sense anymore,
just make it up,
improvise,
no one will notice
except the ones who love you
who know you
who can tell
you’re faking it—
good enough for jazz.
Yes, I remember Dad saying that.
But Jazz is hard, Jazz is not faking it,
and I love you more
when you try harder than you have to,
harder than you can.

SAINT ME

As I approach the one year anniversary of quitting my job in order to devote the time necessary to Mom’s care, I can’t help but do a comparison. One year ago, Mom could make a simple meal, dress herself, get up in the middle of the night to use the bathroom, do laundry, write letters and sign checks. And she knew who I was. Today she can do none of those activities. Is a year as short a time as I think? Has she really lost all that in just a year? And what about next year? What will she have lost one year from now? I have guiltily considered the possibility that it is my fault she’s gone downhill so much. If I hadn’t started helping her out–choosing her clothes, taking over her bills, forbidding her use of the stove and oven, and making all her meals–perhaps she would still be doing these things. Because she’d have to. Because no one else would. That’s probably a dangerous and erroneous thing to consider. Who knows what might have been? At the time, I had to use the advice of professionals, Uncle Google (as a friend recently referred to the popular search engine), and my own instinct to make decisions. I’m sure I’ve made some bad decisions. I’m sure I’ve made some good ones. The only way caring for an elderly parent with Alzheimer’s is like being a parent is that it’s entirely a crap shoot. And that’s where the similarity ends. People who like to make that comparison in a general way have never done either.

One of the most awful and frightening milestones in the progression of Alzheimer’s is when your loved one begins to forget faces and names, especially your own, especially if you have been spending most of her waking hours with her. My mom started this only a few months ago. At that time I could nudge her a bit and she would do a double-take, laugh a little and realize who I was. Only recently have I become aware of her increased confusion regarding my identity. This could be attributed to having several different home care workers during the week who come in to give me some respite. I’m sure she sometimes thinks I am just one of “those girls.” Which, in a way, I am. On the other hand, it’s probably just part of the disease. She might even confuse one of “those girls” for her daughter. But that’s okay, I guess, as long as she feels safe and content, and cared-for.

The other day Mom looked at herself in the mirror and asked, “Did someone wash my hair?” I told her that yes, I had done it a couple days earlier. She smiled at me and said, “I knew that some saint had done it.” I nodded and said, “Yep, that was me, Saint Me.” Nothing could be further from the truth. But if it makes Mom smile to think of the person who is caring for her as a saint, even if she can’t remember the person’s name or that it is her daughter, then more power to her. I live to see her smiles.

FLYING CHICKENS

Last week I wrote an outraged letter to the editor of the local rag here regarding an event held at the county fair, an event I’d never heard of–the flying chicken race. Apparently, chickens are pushed out of a mailbox at some height that would require them to fly. The chicken that stays in the air the longest wins. I couldn’t help thinking what happened when the chicken stopped flying. Yes. Splat.

What does this have to do with caregiving, Alzheimer’s and parenting your parent? The day I read the article about the chickens was the day my mom’s doctor had prescribed Namenda, the only medication out there for mid to late stage Alzheimer’s. And of course it’s not a cure, and not even guaranteed to have any effect at all. But, I decided to get it for her, despite the exorbitant co-pay, just to see what would happen. I would push her out of the mailbox just to see how far she could fly.

I was leery of being sucked into the hope we all have for a miracle, something that will turn the disease around, erase all the damage, give us back our loved ones. Because I knew from the get go that Namenda–no drug–can cure Alzheimer’s. I also started thinking about those chickens. Sure, for ten, twelve feet they were air-borne, and possibly it was a thrill for them, as far as a chicken can be thrilled. At the very least it was a different sensation, different than anything they were used to. And so putting my mom on a new drug could have the same effect. It might bring her back to me, partially and most certainly temporarily. It might allow her to fly for a little while. In the end, though, I know she will stop flying. No drug will be enough to get her into the air and keep her there. So it boils down to what most things boil down to in this whole mess–what’s worse? Never flying at all, or splat?

Previous Older Entries