grandmaislost-blog

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Prank Call

When the delusions go overboard, distract, distract, distract!! Red alert, red alert!!

Grandma's been saying she's moving tomorrow for months, maybe years (on and off with varying degrees of seriousness and urgency)! So, the "get my suitcases/boxes because I'm leaving tomorrow" stuff is never fun & sometimes dangerous (like when she empties her closet onto the floor & is then trapped in a corner because she can't walk through the mess - last time was Saturday, thankfully she was distracted by visiting family and I was able to sneakily clean it up while they chatted with her at the table)! Tonight, she was sitting out front for a bit and got up to go walk to the neighbor's to snag a box from their pile of garbage. Dad spotted her and I ran out to find out where she was headed. How she was planning on grabbing a box from a distance that she tells her therapists she can't make it to and bring it back to the house was a question for which she had no answer. I did my best to play along, to a degree, while still standing my ground on safety. Got her inside & the combination of fantasy world and the fact that she HATES being reprimanded by anyone - especially a grandchild, had her talking crap to my dad. She kept bugging him and and wouldn't let up, when it occurred to me to call her phone to distract her. I waited until she sat safely on the sofa and called her phone. IT TOTALLY WORKED!!! She stopped talking and tried to answer it. But, I hung up. It's been more than half an hour and she hasn't gone back to Sundown Syndrome compulsive fantasy land!! 

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Thanks, Chris Pratt

Often part of the dementia and Alzheimer’s standard advice is to just go with the flow of delusions, confabulations, and “alternative facts.” Yeah. Ha. Well. All too often, in our house - doing that is a slippery slope. That slope can end in a nasty pool of imaginary drama that is worse than fighting for the truth. (Haven’t I said this before? In nearly every post? Why am I asking questions? I am my only audience. Maybe someday.) On respite duty this afternoon,while my parents snuck out to see La La Land, Grandma was on the latest popular rants. I did the usual indulging in the harmless stuff. I did the usual resisting the horrible accusations stuff. In an attempt to escape the conversation while staying in the living room, I found a movie and turned the volume up. It totally worked!! While I am very proud of my distraction and redirection skills... I do have to say that part of me worries about what her dreams might be like. See, I settled the TV on Jurassic World. The grand sweeping aerial views of the fictional island caught her attention. She thought it was a PBS episode of Nature. Either she knows nothing about dinosaurs, couldn’t see the TV very well, or really thought the CGI dinos were lions and elephants!! She got sucked into the scenery, not really understanding the plot or getting that it was a movie. I just rolled with it. The scenes later in the movie when the pterosaurs are picking people out of the crowd like seagulls picking up snacks on a beach, she was startled by - so I had to loudly say “it’s a movie! It’s fantasy! It’s not real!” At that point she laughs and by end asks how they trained those elephants and lions how to do that stuff for pretend. So, my concern - what if she has crazy bad dreams after watching Jurassic World? Hopefully, the Alzheimer’s short term memory issues will work in her favor and she won’t remember seeing the disturbing scenes of people being eaten by scary creatures!

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“Alternative Facts”

New president. Funny new taglines. The definition of confabulations is best surmised by the new and outrageous term: “alternative facts.” Facts are indisputable. Facts can be proven. The “alternative fact” that 3 months has passed versus the provable fact that 6 years has passed = confabulation.  So, lately, Grandma can’t work her old flip phone. The alternative fact is that it is broken. It won’t make phone calls. It won’t connect to specific phone numbers. It’s not receiving phone calls. The provable facts are that she can’t remember how to work the phone. When she shows me how to do it, she’s trying to make a phone call via the text messages. Or log onto the internet on an old dumb phone that has no data plan. When I call her phone from mine, it works. When I call my phone from hers, it works. Every. Single. Time. At what point do you take an elderly person’s phone away? It is more of a caretaker burden than of help. We spend much of the day in this tug of war over dialing numbers & “you need to take the phone to the repair shop.” Often, people just don’t answer the phone. I totally understand why. It’s 6 years later. Not 3 months later. There is no paperwork to turn in from her old apartment. The apartment was never in anyone else’s name. No one kidnapped her from her apartment. Was she excited about giving it up? No. But, she admitted to falling a lot and not keeping up with her meds properly. The conversation about her moving with us started long before it actually happened. It had come up in a “someday” context probably since the time she moved there by herself. In the aftermath of 9/11, I started this conversation seriously. I did. I bring that up regularly. In part, trying to deflect the horribly mean and resentful accusation that my parents forced her to move. It’s simply not true. I talked about it for YEARS. I begged her to stay every damn time she got sick and had to come for treatments, surgeries, and care under our watch. No blame to those who lived near her then. Jobs, busy lives - it’s OK. It happens. She lived safely and healthy there alone for a long time. But, at some point - a senior independent living apartment became inappropriate and dangerous. All but a select few who disagree, know that this was the right choice for her. While it has come back to bite us in the ass, I know that the move has saved her life. She’s 95. There is no way she would have made it this long.  Back to the phone... 2 days ago, I was trying to (AGAIN!) prove to her that her phone works. Just as I hung up with her, as we spoke to each other from maybe 10 feet apart, as I loudly and simply described my every move and spoke “see, it’s me! (as I pat myself on the head making eye contact with her and she nods in what I thought was understanding) we’re talking and the phone works!” ... not 10 seconds after the call ended, I said “so, the phone doesn’t need to be be fixed” - she says “oh, I know. I never said the phone was broken. I just got off the phone with your mother. Didn’t you see me talking to her?”  I realize now that I comically face-palmed. I wish someone had been there to see it. 

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Crossed Lines

So much of the literature and tv news segments and online outlets dedicated to dementia and Alzheimer’s suggest this pretty relationship between patient and caregiver. I've mention the medication commercial before. It really, REALLY, bothers me.  It’s so fake. It’s total bullshit. When in the thick of it, the actual experience of being a caregiver so far from what they talk about. Sure, some people have chill grandmas who just keep sweetly telling the same story over her daily oatmeal. But, it’s not the norm. From those who have shared their experience with me, my grandma and her mean, fiesty, combative, dangerously delusional mentality and behavior is pretty average. That translates into “total media bullshit.” Hashtags to end Alzheimer’s and purple walks are great conversation starters... but, finish the damn conversation. Get to the meaty parts. The ugly parts. The real parts. A few days ago, I was on my way out the door to pick up a few little nieces from school. I was fine on time, even a few minutes early. I was met at the front door by a super confused grandma trying to “go out and get some fresh air.” Well, she was unsure of how to get out the front door with her walker (which she’s not supposed to do alone, anyway). I started off in “total media bullshit” mode. Sweetly asking her what she was doing, suggesting she wait until I get back, reminding her that she can’t go out alone, etc... It escalated quickly. She was standing firmly, that she was NOT going to move a muscle. That she was not coming back inside. That she did not care that I had somewhere to go. That she didn’t care if the girls were picked up late. My line was crossed when disregard for preschoolers’ feelings and fears were shoved away. I cut her off, firmly “come inside, now.” She loudly said “do you know who you’re talking to, do you know who I am?” (at which point, the smart-ass in my head screamed “yeah, I know - but, do you??” instead, I choked back a chuckle) I answered “yes, I know who you are - but, I have to go get the girls, so what you want to do needs to wait a little bit.” She then tore into the usual tirade of ‘nobody is the boss of me, I can go outside if I feel like it, who do you think you are’ and throwing in some crap about my standing in the family chain of command. I raised my voice, noticing this has taken nearly 10 minutes and now I’m cutting it close for my school bus duties. When respect for your elders and compassion for a person’s symptoms has to take an immediate backseat because their belligerent and combative behavior has you physically trapped. You snap. I said (ok, yelled) “you need to come in the house or I’m going to pick you up and put you on the sofa. Those two innocent little girls’ feelings are more important than yours. Get out of my way, now.” She finally started moving and mumbled on some more stuff about disrespect, I mumbled back more stuff about how she’s disrespecting children. Yeah, it was that shallow and petty. But, it’s daily life. Always some simple thing she wants to do or thinks she can do that get in the way of something that EVERYONE else agrees is more important. 

I can feel myself pulling further away. She can, too. She’s mentioned it. “You’re not the same. You’ve changed.” Yeah. I have. It’s in self defense. I need to physically, mentally, and emotionally defend myself. It’s why I named this “Grandma is Lost.” I’m also grieving for a woman who doesn’t exist anymore. That person ranting that someone stole her phone (that’s on her dresser), the one accusing all 6 great-grandchildren of moving her socks to a different drawer (she rearranges her dresser weekly), who really believes she’s getting her own apartment in another state next month (demanding boxes & suitcases multiple times daily), and lots of other totally insane and often aggressive things is still her. It’s still her body. But, there’s not enough of the real her left for me to recognize. 

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Branches Galore

Our family is tree is pretty extensive. This evening’s visit with a “distant cousin once removed” within the tree, but close in the familial social circle, has Grandma’s marbles tossed across the floor. Add in a dash of Sundown Syndrome and it’s a recipe for disaster. There’s this weird balance that is 100% impossible to get right all the time. She needs the mental stimulation, she needs the social interaction, she needs to feel the family bonds, etc... Also, she needs routine, she needs consistency, she needs to trust what she thinks is coming next, etc... Visiting family out of town and out of town family visiting her are things we should do more frequently in some ways. In other ways, they are things we should avoid. HOW DO WE FIGURE IT OUT??? I feel like we are usually closing our eyes and throwing the dart at the dartboard and hoping for the best. Most often, her brain is more like we’re throwing overcooked spaghetti noodles at the dartboard one at a time. 

**** I was totally going somewhere with that dartboard analogy. But, I forgot. No, I’m not experiencing my own Alzheimer’s symptoms at 41. Grandma was in the bathroom. I literally just jumped up off the sofa, nearly killed my laptop & stepped on my 2 year old niece. Why?  Because Grandma made some noise in the bathroom that made me run to see if she was ok. As I’m typing this -she’s headed back to her room, nude. Yeah. I don’t even know what I was trying to say before being startled into action. 

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Try Me

Grandma's mental and physical decline is usually at a steady pace. But, these UTIs are a major kick in the pants. I really need to research what the connection is. I'm curious. How can a pee infection cause so much neurological havoc? A sinus or eye infection doesn't do that!! We're done with this most recent one. But, the upswing in behaviors is still going. In the last few days she's tried to*: ···cook on the stove (15 year old great grandchild caught her & stepped up to stop her) ···leave the house to go to the bank on her own (it was late on Saturday, so I stopped her with the day [despite the other reasons like no mass transit, no actual checks to deposit, she doesn't even know the name/location of the bank, and her general state]) ···tried to shower by herself (thwarted by me by taking out the bath seat, pulling the shower curtain rod off the wall, & hiding both of them after arguing with her) Sorry, Grandma. But, I've still got my wits about me and I've worked with kids for some 20 years. I've got little kid tricks up my sleeve. On days you think you can shower alone, I'll just take the shower curtain off and put it in the trunk of my car if I have to! Talking smack and snark in my head and/or puking it out here, in a blog no one is even reading, feels better than I thought. I'm sure there would be plenty of experts (real, armchair, and anonymous cowardly keyboard trolls alike) who would disagree on some of my methods of caregiving and communication. But, I often resort to preschool maneuvers. Want to avoid cutting fingers off? Preschool teachers keep knives and scissors in high and/or locked cabinets. Recently, we've moved the knives out of her reach. At 5'1", they're almost out of my reach, too. But, that's another topic. * Don't forget, I'm not the primary caregiver. I'm usually only home in the evenings M-F and am in & out on weekends, unless I'm substitute primary caregiving. Much, MUCH more happens than what I share. Daily conversations and/or questions (always followed by telling us we're wrong) of what day/month it is, how old she is, how much she's eaten/drank, etc... Sharing the truth vs. playing along with the delusions is a delicate balance I certainly haven't mastered. I'll keep trying, though.

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I was on duty for a good portion of today. Nothing seemed to stick for more than a few minutes. As was the “are you crazy? I haven’t lived here for 5 years! I’ve only been visiting for a month, leaving next week, get my suitcase, my apartment must be dusty” tune. We had a relative visit with his wife and teenagers for the last 2 afternoons. She knows him, has since he was a boy. Granted, she hasn’t seen him in many many years. With the change in routine and extra strangers in the house, she kept switching who he was when she and I were here alone for a few hours. A nephew from the wrong side of the family, the man from the bakery downstairs in the old neighborhood, the son of the wrong in-law.  I was putting a little niece to nap and came out to hear talk of a knife. (Ugh. Knives. We really just need a locking cabinet. One with face and retina scanning technology. Do they make carbon dating locks? So, only people between the ages of 10-80 are allowed to access knives. *note to self: invent it, patent it, sell it* But, I digress...) She was on her way to get a knife from the kitchen, but remembered she had already gotten one and it was in her room. I was attempting to pray, meditate, Lamaze breathe, channel Jack Nicholson saying “goosfraba” in Anger Management, and just trying not to have my brain explode like the grand finale of the fireworks earlier this week. She’s rambling on about having already cut a mango in her room today and stops mid-sentence. She looked up at me, I said what?, she laughed and said “nothing, I just need to get a knife.” There were calm and polite, then not so calm, then no so calm or polite words exchanged. I repeated the phrase “the knives stay in the kitchen.” It became almost a chant. She finally agreed to stand at the counter to use a knife. A minute later, when she did get a knife, I ended up blocking the path out of the kitchen. Again, the words were calm and polite, then after about 10 times, they were not. Ultimately - my words were “I can stand here a lot longer than you can. Put the knife on the counter, we are not doing this your way.”  A few minutes later, 4 year old niece asks “what did she do that she got in trouble?” Ugh. In my head I thought “a granny knife standoff!” I pictured an old western duel. Both parties standing a few feet apart, neither moving a muscle. I laughed and said “she wasn’t being safe with a knife. Just like it’s our job to keep the kids safe, we have to keep the old ladies safe!” 4yr old says “maybe she should sit in time-out.” It was a perfect way to end the scene. I needed a laugh, and from her standpoint - she was totally right. 

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Slip-n-Slide

Planning things take on a whole new life when you have children. When you are the primary caregiver of an adult with dementia/Alzheimer's, making plans can be excruciating. Our care-giving team was bigger. But, it shrank. Because of my place in Grandma’s care-giving team, it is often not as difficult for my parents to slip away for a day or a week. I can twist my stuff to be here and I know Grandma’s routines, her home care team, her likes-dislikes-moods, and I know how to handle her emergencies. Many a midnight in the emergency room I have spent. I’m great back up. With the extended team dwindling, the prospect of making a family trip becomes a juggling act with questions like “would it be alright if ___ takes care of her for a few days while we’re gone? What if there’s an emergency and they’re not on the medical power of attorney?”  As we’re trying to plan a little trip, and not let Grandma in on it, we keep hitting walls. Yet, hilariously enough, she seems to keep waking up every morning saying she needs to pack her bags because she’s getting on a flight the next day. At dinner a few evenings ago, she had a sudden panic moment saying “what time is it? We need to leave, I’m going to miss my flight! I have to get my bags and head to the airport!” Her mental state is like walking on a slip & slide. Every now and then, you can actually walk across one without falling on your ass. Other times,you walk one step and fall on your ass. Usually, you just slide right across. Grandma will get way worse over the course of a few days, then she’ll kind of come back to a neutral level. There are some days that are just outrageous and make me wonder what planet I’m on. She’s never 100% back. But, then that would make me the one with a cognitive disorder to ever think that can happen again. 

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Truth Serum vs. Honest Lies

It funny (but, not funny) how dementia & Alzheimer’s creates twisted perceptions, misunderstandings, and delusions. Things that come out of Grandma’s mouth are often partial truths that are upside down. Other times they’re completely fabricated. Yet, there have been some times when things are said that could just as easily be true, even if they sound completely outrageous. It is impossible to decide what parts are really true. This is a sad and potentially dangerous part of being a caregiver or even being in the outer circle of an Alzheimer’s patient. It could simply hurt our feelings or it could turn our lives upside down. Whether it’s fiction, partial fiction, or repressed truth - almost every sentence has a potential negative outcome. In the literature and tv blips about Alzheimer’s care, looking for the good and ignoring the bad is heavily promoted. But, I wish they didn’t act like the bad stuff wasn’t a big deal. It is a big deal. It can hurt. It can affect relationships. It can destroy family dynamics. 

Grandma is also a naturally nervous and jumpy person. Despite the anti-anxiety meds, she startles super easily. Just a bit ago, at our kitchen table, I approached her saying “I’ll throw your napkin away” with my hand open for her to give it to me. She didn’t hear me or her ears heard me but my words didn’t register - I don’t know. She flinched, screamed, and ducked like I was attacking her with a weapon. I put my hands up and walked away. It was one of those you have GOT to be kidding me moments. Can you imagine that scene at a restaurant? Being approached by someone who works for family services, a police officer, or any other person with concerns? It has happened in our own front yard. Thankfully, we are close with our neighbors. Several of which have experience with their own relatives and dementia/Alzheimer’s.  These reactions could be out of delusions that I’ve done something to her. Or, they could be out of recalling being punished as a child. Deciphering fact from fiction is super tricky. 

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Sometimes things with Grandma are just funny. It’s too easy to get offended. Adopting the laugh stance in the “laugh or cry” circumstances and/or conversations isn’t always the easiest. As my kid and I were heading out for a Memorial weekend camping trip, Grandma gives me a very serious warning. That I should make sure anything important or valuable is safe and secure before I leave. I asked why. According to her, when i’m not home, my father rummages through my things and likely takes them. Perhaps laughing as loud as I did wasn’t appropriate. But, I couldn’t help myself. For many reasons, but 2 of them in particular.  Number 1. He’s my dad. He never has and never will go through and steal my stuff. Number 2. I had just dropped him off at the airport. He was going to be gone for several days. He wouldn’t be here.  Silly stuff!!! 

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So long, farewell, auf wiedersehen, adieu

Grandma spent a week out of town visiting relatives and taking a stroll down memory lane. It was, shockingly, a successful trip with minimal drama. She came back somewhat disoriented. A lot has been extra “off.” One line of conversation that has lasted almost all week is knowing she was “back home” - only her idea of “home” was in the Caribbean. Sorry, Texas is home. Although, if she can magically turn our backyard into a beach I’ll gladly join the delusion for an afternoon. 

As I’m busy with my own routines, the formal greetings and farewells often fall by the wayside. It is in our cultural and family tradition to hug and/or kiss elders along with a formal hello and blessing request. When you live in the same house and you’re in and out several times most days - a quick “later, gators!” as the door slams behind me on my way out feels like enough. As does a single, albeit loud, “hello!” for everyone as I enter the house. There are 5 other people here. I just don’t feel like I need to hug and kiss everyone. Every. Single. Time. Arrivals and departures can be without fanfare or formality, right? No. When her mind is like a sieve, simply making a 10 minute run for eggs is cause for a curtsy, kissing the ring, requesting a blessing, and perhaps shouting my declaration of love from the rooftops. Ok. So, maybe the exaggeration symptom is getting contagious. But, seriously. I just want to walk in and put my keys down before being accused of not loving her anymore and the interrogation of where I’ve been, how are my siblings and their kids, where’s my daughter (even if she’s been home all along!), why was I gone so long, etc... Some things with Alzheimer’s/dementia are major soul punches, heart breaks, and urgent situations. Most things sit at a low simmer. Don’t seem so bad, until after a while that simmer has evaporated away all semblance of patience and sanity in those who are always in attendance. (for my own amusement, I often picture Cheri Oteri’s SNL “simma down nah!” when the inquisitions begin.)

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Needs a map

With my parents’ return from their 2 week trip, a certain amount of “normalcy” has returned with them. Most of it good. The back and forth between Grandma and my mother is never fun to hear, or referee, but it’s also nice to see that “normal crazy” again. The best behavior days with me were easier to navigate, but I always feared being a scary stranger that would cause her to call the police or a relative in fear of an intruder. There have certainly been moments of lost faces, a cousin was not at all herself at a birthday party a couple of weeks ago. While I seem to have settled back into my true identity, one of my other personas still exists. According to a recent conversation with my sister, Grandma still thinks there is another granddaughter with my name. There are still two of us!! I’m not sure where the other one went off to. I’m sure she’ll reappear eventually.   Mother’s Day was nice. A small family dinner. Its always funny to me how when there’s company, Grandma wants to go to her room to clean up or make a phone call. If we let her, then when the company leaves she complains that they didn’t stay long. Yet if we make her stay, we spend too much time convincing her to stay. Doesn’t matter how good the conversation is. It’s just all part of the contradictions in her head. She’s doing and saying the total opposite in many cases. I joked the other day that I was going to make her a map because of her crazy way of navigating the house. If she needs to go left to go somewhere, she’ll steer right until she’s got to make a complete U-turn to get to where she wants to be. I stopped her before the U-turn and showed her what she did one day; she laughed at me. Told me I was being silly. Then I asked (in Spanish) “why are you standing there? How did you get there when you’re trying to get to the bathroom?” She looked around, shrugged her shoulders, laughed, and told me I was crazy.  At which point, I laughed and said (in English) “nice to meet you pot, I’m kettle!”  #endalz #potandkettle 

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10 Second Tom

A  few more relatives have been lost, but only briefly. I’ve gotten some strange looks and double-takes of “who is that?” But, it hasn’t been for long. For the last couple of weeks, I’ve been my true self. With that true identity comes the true behavior. After some dizzy spells and another couple of falls, there was a day she was extra wobbly. To avoid unjury we insisted she spend the day in her wheelchair. She hates it. HATES IT. But, when you’re not capable of staying on your feet properly you’ve got to sit. When you can’t remember why you’re in the wheelchair 10 minutes after you’re put in it and keep trying to get up, we end up using an old physical therapy belt as a seat-belt. The seat-belt is as necessary for a 94 year old with dementia/Alzheimer’s as a car seat is for a 2 year old with a sugar high. Memory of safety rules and impulse control do not function properly in either demographic. That was met with serious objection. OK, “serious objection” is a joke. Holy crap! She acted like we tied her to a tree in the yard like a dog! But, she seriously is like 10 second Tom in the movie 50 First Dates! She forgets she fell or almost fell because she’s been dizzy all day. Even when she says she needs to sit/rest she only does for a minute or two and is up again because she forgot she wanted to sit/rest. It’s another of those dirty secrets of this disease. It’s easy, recommended, expected of parents to baby-proof a house to keep a toddler safe. High chairs, strollers, exersaucers, play yards, baby gates, door knob covers, etc... are almost mandatory pieces of equipment for a house with a small child. Some serve as a functional piece of furniture, but every single parent has used a high chair to keep their toddler from getting into something unsafe at some point. But, why is it so offensive and horrible to keep a 94 year old safe from falling? It’s the exact same intention. 

It’s interesting how some of the stuff that’s been fussed about forever, like being barefoot on a cold tile floor despite it being hot enough to turn the AC on, take on a different life. Not even in the dead of winter at the north pole can you catch pneumonia from bare feet on a tile floor. I know this. It’s been an annoying thing Grandma has fussed about my whole life. Now, the emphatic and exaggerated way it’s YELLED at me is startling and hard to ignore. I keep it to myself, like 98% of the time. In my head, however, my snark is high. With the bare feet, I often think “if I can absorb imaginary pneumonia through my feet, maybe I can write a dollar amount on the floor and stand on it and my bank account will suddenly have extra digits!!” If only.  

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Never mind!

There have been a few moments where I thought I was lost again. But, I’m pretty sure I’m really back. Some of that stuff was rough. I had read how the forgetting of faces/people is heartbreaking. It really is. Worse than I anticipated. The initial shock was severe.  After my sister in law passed away last year, my brother came up with the term “soul punch” for those moments, conversations, realizations, songs, phrases, mementos, “firsts,” and other things that just suddenly feel like you’ve lost your breath.  That initial “where’s my granddaughter” - you mean, me? conversation was definitely a soul punch. However, once I regained my proper breathing, being a different person was a mere inconvenience. If anything, when I was another person (or version of me), Grandma seemed to mind her P’s and Q’s a little more. The feisty and combative demeanor softened and nearly disappeared. I think I figured it out. She was on her best behavior... as if she was a child who’d been taught to mind her manners when company arrived!  Most of the food was eaten without complaint. Most of the physical safety reminders were taken agreeably. Most of the conversations were pleasant, or at least neutral. In my first post, I mentioned how the forgetful and losing faces was often easier for caregivers to handle. I got that from different websites. From all the reading on every Alzheimer’s website I can find. I didn’t really know that myself. I did already know how hard the other combative, feisty, delusions, exaggerations, etc... are. But, being able to really see and experience the difference is eye opening.  Now that I’m back to the real me and she’s really kicking this UTI + out of routine “frame of mind,” the ugly stuff is back. She’s comfortable and “back to normal.” After yet another fall, there was an attempt at some furniture swapping in the name of safety. She wasn’t having it. None of it. Turned into “you people stealing my stuff, taking my bed, blah, blah, blah.” At one point, she tried coming into my room- which is the converted garage with a step dropping into the laundry room before stepping back up into my room - NOT SAFE AT ALL FOR HER TO MANEUVER!! Why to my room? Because she was convinced that her bed had been given to me and it was in my room. It was not. Despite my saying so, she insisted. “What, do you think I’m stupid?” No, I don’t. But, your bed is still not in my room. Showing her didn’t convince her. All. Day. Long. It had been such a horrible day of forgetting that she has fallen so much lately, accusations, delusions of “when I get my own place, I’ll pay some big men to take my bed out of your room,” etc... that we caved.  To the point that the next day, my dad took her bed & did a custom rebuild to make it a little safer for her and we put it back. There had been some conversations a while back about when she needs to have a hospital bed, that I would get her bed. She said it herself a few times. I thought it was nice, I was happy to have it. It’s not some beautiful antique family heirloom headboard. But, it’s hers and she wanted me to have it. Since that whole mess happened 3 days ago... never mind. No, thanks. I may change my mind someday. Being accused of stealing it in such an ugly way kind of ruined it for me, though. Note to self: keep the crocheted blanket & other keepsakes that she already gave me safely out of sight. If she spots them, she might want something back!! I’ve had that blanket since the early 1990′s, I can’t let her ruin that thing for me! 

[grandmaislost-blog]

Sweet Smiling Faces? HA!

I’ve been noticing a medication commercial for Alzheimer’s lately. Lots of patients and their smiling caregivers.  All seem to be family members. Everyone is smiling.  Everyone is happy.  I mean, they are trying to sell a drug to get the patients to feel and act better. But, how about a real advertisement? One where a before and after scene is played out? One where the patient is mean, ornery, aggressive, feisty, smart assy, dangerous, or something a little more accurate. Why does this truth have to be a dirty secret? This disease is terrible, but let’s be truthful of the symptoms and behaviors we are trying to contain with this magic pill. Once they get the meds and they are blessed with the intended result- THEN they get that sweet smiling face.  Today’s topics have been brutal. I’ve not been me all day, again. My backstory is getting more interesting.  I don’t seem to be that other relative. My mother is my actual mother. But, Grandma supposedly just found out about me recently. I’m some secret love child - at least my dad is the same dude who’s been married to my mom since the year before I was born. It is terribly sad and hilarious at the same time. I just can’t make this stuff up. I know the people I’m telling believe me. It’s just so far fetched, I think I tell them so I don’t think I’m the one losing my marbles. I’m very thankful my brother was at the dinner table to hear some of it and he gently corrected. Tried to bring me back to the correct history lesson. She kind of laughed at him, like he was silly and I don’t think she believed him. She let it go, though. For now. 

[grandmaislost-blog]

Cloned?

A few days since the initial flipped switch. I think I prefer my new car analogy. Grandma’s mind is like an old automatic transmission. It keeps slipping gears.  Keeps slipping out of Park = the restlessness that makes her try to get up and do stuff when it’s really not possible (or, at best, a terrible idea!). Slipping into Reverse = usually, it’s less than a decade back that we travel. But, last week there was a day that we slipped into the Kennedy and/or Johnson administration.  Slipping into Drive is dangerous = it’s both physical Speedy Gonzales for about 5 steps before running totally out of gas; and mental with certain great grandchildren being adults (most creative story goes to an 11 year old who is a successful dentist {note to self: let cousin know to steer her kid into dentistry.}) Then, there’s Neutral.  We like Neutral. We don’t spend enough time with Neutral. Can we summon Neutral? Is there some spell for it? A patron saint to petition? “Good Saint Anthony, look around. Something is lost and can’t be found!”  My kid hopes I can get my hands on Snape’s copy of Advanced Potion-Making. I had previously been lost. I vanished from existence. But, thankfully, I’ve returned. Sometimes as myself. Other times as another relative. The most interesting version is of a duplicate of myself.  I’ve been split into two different people. Her caretaker, her right-hand-man, etc.. The other me is away helping other family with stuff.  Not to have been seen for a while. “I wonder where she is? Her daughter is here and she hasn’t even called to check on her!” There’s a clone of me.  There’s a weird version of me, with my name, but another relative’s position in the family tree. That’s not really me, though. Just my name.  I have no idea which one I get to be. Minutes or hours can pass between shifts, there’s no way to tell. I am incredibly grateful that, so far, whatever version of me I get to be - it’s still mostly pleasant. I’m not so lost that I’m a stranger who broke in the house causing fear and further confusion.  #ENDALZ 

[grandmaislost-blog]

Now, I’m lost.

15 minutes after writing about not sleeping, I became a stranger.  Sometimes there is no rhyme or reason to what happens or why things happen.  But, in the middle of breakfast and coffee a conversation about missing a particular granddaughter came up.  “I miss her. I wonder where she’s been.” I go through the list of names of the granddaughters and great granddaughters. No, not them. Ok, let  me throw in some daughters, stepdaughters, even a couple of nieces.  Nope. Not them.  I mention a few male relatives “No, my GRANDDAUGHTER” - words spoken slowly to me like I’m the one with the comprehension issue. I try to shift the conversation, she’s right back at it.  I say a couple of most likely names again; nope, I’m still not getting it right.  Then. Then, I say my own name. Her face lights up, she makes eye contact with me and says “YES!! That’s the one!! She does everything for me. I wonder if she’s sick? I haven't seen her around in a while.” I probably should have handled it differently. But, I just stood up and walked away in tears. This is only my 3rd post. I’m not even sure why I opened this account. No one is even reading this. Not that it matters.  All that matters is that in the last 3 hours, I’ve faded in and out of existence. My parents are supposed to be on a vacation. Celebrating a birthday and just taking a break. Maybe I’m wrong for not divulging all the details of what has gone down in the last week and a half.  That Grandma’s condition has deteriorated in such a big way.  She’s been getting physically & mentally worse for a while.  It’s been pretty evident for a while.  But, the way this latest UTI has affected her is unreal. It’s like someone hit the fast forward button to 4 triangles instead of the usual 2 (3 tops!) on the DVR. I’m truly praying that it’s still the temporary effects. Sadly, I’ve been reading up and it could just as easily be permanent. Somehow, a pee infection can cause irreversible deterioration into dementia/Alzheimer’s.