I have been looking after my mother for several years and have posted quippy FaceBook updates on mom’s progress with dementia; posts being usually short, usually funny things she’s done or said. Her dementia however is now beyond my ability to manage and is not so funny anymore. Yesterday, for example, was so bizarre the retelling requires more than a tweet or FB post; it is a chapter in a book on “How to Loose Your Mind Taking Care of a Patient Who’s Lost Theirs”. Here’s what happened yesterday, but first some background events:
Mom was in a nursing/dementia facility last month for a couple of weeks while I got some rest. This facility was highly recommended and I looked forward to the time off especially after all the hoops one must jump through to have a patient admitted to such a facility: paperwork, proof of income, doctor’s appointments for orders, medical history, prescriptions filled, written needs, insurance papers, packing with all clothes and possessions labeled. The staff at the nursing facility was fabulous though the old building seemed a bit overcrowded. Mom had a roommate who regularly soiled her bed and made quite a mess, and, according to mom, messed the bathroom. There was a lingering oder in the room when I dropped mom off and the TV droned with an irritating grainy screen, laugh tracks and nonstop chatter of 60’s era sitcoms her non-communicative roommate apparently watched all day long. It made me sick to leave mom there but I stealed my emotions against her pissed-off-ness and quickly got myself out of there to avoid any begging on her part to take her back home. I did not rest easy during my at-home vacation, especially when a facility staff member called to say they had misplaced mom for a while until they found her under a table with table-cloth hiding from the nurse who mom was convinced was trying to poison her with pills. When I picked mom up I was more emotionally tired than when I dropped her off two weeks earlier. So much for respite care.
Mom has not always been a respecter of persons. Over the years I tried demanding more consideration for me and gratitude for my efforts on her behalf. A few times I really bawled her out but it never seemed to take. My “too-long-for-FaceBook post” today begins with another attempt at teaching and demanding respect from my mother who has late stage dementia. Trying to modify a dementia person ‘s behavior is a fool’s errand.
The madness yesterday began with me promising to take mom to town for garden plants and a book she wanted (she wouldn’t tell me what book it was. Never mind she can’t read anymore). Once she was washed, combed and dressed she was ready to go and ready to go right now. She also made a point of saying she did not want to live at “that place”. Last week I had taken her to a beautiful Nursing Home facility to meet the staff and interview as a place for her long-term. Unlike respite care she would have her own room in a home atmosphere with her own furniture and only 10 patients per home with a beautiful garden patio decorated with soothing chimes and colorful bird houses. I hoped to never have to take her to a “that place” but her dementia needs have forced the decision especially her chronic UTI’s that will create havoc in a dementia mind i.e. delusions and paranoia. I have secured a room at “that place” for later in the month. I have been conflicted as to whether I should tell her ahead of time or surprise her one day taking her to her new temporary (?) home after a day at adult day care. In other words, do I torture myself by telling her or betray her by not telling her until we drive up to the facility. The later Is cruel but the better of two hopeless choices. I reponded to mom’s concern by telling her I already did the paper work and she will be going to “that place” later in the month. My words would determine the madness to come but, at the same time, sealed my emotional steadfastness that I am doing what’s best for both of us by placing mom in a home, for awhile at least. Telling her this turned mom’s smile upside down and we crossed the threshold into a three-hour snark fest and battle of wills.
I appealed to mom as my mother by saying I am tired and need a break. I saw in her eyes that she wondered, tired from what? I told her that I don’t know what to do anymore about her habitual need to wash and salve her crotch (sorry, readers, but vaginal itching and other unseemly body issues are a major part of elder care). I repeated I did not know what to do about it anymore and when I remind her of the nurse’s instructions; one being she’s drying that area out by over-washing; she insistsed we don’t know what we’re talking about. Again I asked her to have just an ounce of compassion for me and my needs. Of course she wouldn’t consider it. I told her we were not going to town unless she treat me with some respect. If she said something nice, respectful or compassionate I would reconsider taking her to town. I guess my instructions were not specific enough because I was not about to get an ounce of satisfaction. I was simply NOT going to win.
Mom has sneaked to neighbors in the past telling them I was holding her against her will or was going to burn the house down. She pleaded with one neighbor with early onset dementia to call the police on me. He did. She has also set off the house alarm and when the alarm service called to check, she cried out in the background, “Help! she’s beating me!” I’ve jerry-rigged the front door, covered the alarm button and disguised the garage door opener to keep her from running to neighbors. Yesterday, mom, now in a sour mood, wanted to go outside and check on the garden. She can’t figure out the front door so I open the garage door so she doesn’t have a melt down and doesn’t see how I de-jerry-rig the front door. Even though she was angry with me I really thought she would stay in the yard checking out the garden. While she was outside I made a smoothie for myself. Several minutes later I received a text from my neighbor. “Your mom is here.”
The neighbor tells me that mom told her I was planning to take everything out of the house to sell it, that I was going to sell her jewelry for $300. She said I was also carousing with drug dealers in that boat on the lake because they have been there for a while. I have a great neighbor who patiently tried to tell her that it was unlikely I was going to do these things. I whisked mom out of the neighbor’s house and back home but she would not come in, instead she acted as though she wanted to get into the car, driver’s side. Seeing me, she shimmied up the drive and down the street back to the neighbor’s. “She’s not there anymore,” I called out, “She’s gone to work.” Mom turned back then past our drive and on down the street. I grabbed my smoothie still in the blender container and followed her a few steps behind. She started up the drive of another neighbor. “You’re not going to their house,” I said blocking her way. “These are my friends, not yours.”
“Well,” mom replied, “when I tell them about you, they won’t be your friends anymore.” Dementia or the real mom? Like I said, not always a respecter of persons, me included. Mom had regularly, pre-dementia (?) resolved interpersonal conflict with retaliation by gas lighting via an unaware third-party. Fortunately now third-parties immediately see the dementia and don’t believe her story.
Mom “respects” my block up the neighbor’s drive. If they were home they must have been baffled by mom’s and my long silent standoff at the base of their drive with me drinking a pink concoction from a large blender container. Mom finally turns and continues walking up the street away from the house. Eventually a car drives by and she tries to flag it down. OMG! she’s trying to hitch a ride! While she steps to the middle of the street flagging the driver down, I am behind her trying to wave him off. One guy finally stopped for her. He’s confused while she asks him for a ride before I step in to say we’re okay, she’s trying to run away and has dementia. My usual reluctance and compassion for her feelings in using the word “dementia” in her presence has completely shut down. I don’t care anymore.
Mom who normally can’t walk around the block has, by now, walked a good half mile flagging at cars and asking a guy carrying jerry jugs of gas to his car if he were a fireman. Of course he’s confused and, unlike me, humored by this goofy old woman. “No,” he says, “I’m mowing the lawn.” She wants to know where the fire station is. I tell the guy all is okay, she has dementia and is running away. Mom insists she’s not running away and parks herself in the middle of the street with cars coming in both directions. I tug at her sleeve to get her out of the road. She pushes me off demanding I get off of her. I wave the cars on who clearly are witnessing a domestic conflict and not sure what to do. I smile and wave them on carrying my empty blender container. Drivers reluctantly drive on. I make a mental note of the jerry-jug guy thankful that I have him as a possible witness to mom’s dementia induced queries in case another observer reports me to the authorities.
We are 3/4 of a mile from home and I finally offer her a trip to town if she would turn around. She’s red-faced and tired but I sure as hell am not going to flag down a ride home for her. To my shock, she turns around and heads home leaving passing cars alone. It was a slow walk and she struggled but we made it home and I told her to get in the car while I grab my purse.
Driving out of the neighborhood she suddenly says she doesn’t want to see the doctor on the hill but the one farther down. Oh, Jeez, now what? “Do you think we’re going to the doctor? I thought you wanted to go to a bookstore and garden shop.” She replies, in that oh so irritating snarky voice, she wants to do all three. I know she is obsessing about her itchy crotch right now. Last month she was convinced she had a hole in her bladder leaking urine into her bloodstream and insisted the doctor’s’ nurse (up the hill) sew it up. No can do. Mom no longer likes that doctor’s office up the hill.
“Today is Saturday,” I tell her. “The doctor offices are closed. We’ll go to the garden shop.” She’s exhausted but won’t admit it. At the garden shop the owner says it is a couple of weeks too early to plant with frost warnings still predicted. Thank heaven. For the rest of my life I will remember the garden shop owner fondly for that simple statement because I knew as soon as we got home with plants mom will insist in that oh so snarky voice that we don’t have enough and have to go back. For mom, enough is never enough. I told her we will come back in a couple of weeks (she will be in the nursing home by then) and suggested we get something to eat.
We had a glorious hour of peace over lunch at Chilis. The waitress disappeared for long periods of time but my usual impatience was overtaken by relief for the long peace. I gave the waitress a nice tip when under normal circumstances she would have been penalized for her disappearing acts. Mom was too tired to eat much and passed the offer to go to the nearby bookshop. Another reprieve as she was surely going to ask a clerk for help in an incomprehensible way, the clerk flustered with a real desire to help and after finally finding something, it will be a book we have or one she can’t read. Mom refused to tell me ahead of time what book she was looking for as I am too controlling and have to have everything my way.
Today while I write this, mom has washed her crotch at least four times in the last few hours. Contrary to the nurse’s directive, she aggressively washes like a Victorian parlor maid scrubbing the soot from a marble stair. Yesterday and today any reluctance to place mom in the nursing home has disappeared without a trace even if she spends weeks hiding under a tablecloth over a table convinced the nurse is trying to poison her. I shall not be moved and the move-in date won’t come soon enough. With the help of neighbors and a friend who has been through it, encouraging me, I am managing, sometimes barely, the madness of dementia care. My once dignified mom has done a lot for me as her daughter but right now I cant remember them.
copyright Tamara Ann Burgh all rights reserved, 2015