Journal entry dated September 2, 2012
Today is Brother C's birthday. Mom insisted on having a party for him, so she invited the family over for a steak dinner. I was tired the night before and didn't get a chance to bake Brother C's cake, so I had to do it after I got home from church. Mom had barged in on me in my bedroom (we locked the bedroom door every night after that!), demanding that I take her to Grandma's church. She had told Grandma she was going to church with her this morning and got upset that Grandma left without her. She INSISTED she had to attend her Mass, but I told her it was okay if she didn't make it, especially with how late she'd be. I offered her several solutions, but Mom was hysterical, so Husband G offered to take her while I got up to get ready for our church.
I suggested to Mom before she left to not wear her high heels, but she insisted. She had taken them off before she even got home. I had left out the flats that I suggested she wear, but she ignored me. By the time she got home, she was in full compliance of wearing the shoes I tried to give her before she left. But why listen to me? I don't know what I'm talking about! She's acting like a spoiled teenager!
Mom was very dizzy, weak, and confused when we got to church. I had to help her in and out of the car, up the stairs, get in and out of the pew, etc. When we got home, she was taking too long to change her clothes so I went to check on her. Company would be arriving later today and we hadn't even started dinner. She had changed into her floppy aqua hat, aqua blouse, and white shorts, and was attempting to put on aqua eye shadow (she's been on an aqua and orange kick lately). What a mess! "Here, I can't do this right, will you finish it?" she asked, handing me her compact. I fixed it as best as I could--it was way too dark. I should've started over but we didn't have time--she'll just have to look like a lady of the evening. She also had to wear lots of jewelry--how was she going to get dinner prepared with all those necklaces and bracelets getting in the way?
Grandma was stressing over getting the potatoes made. Stressing and worrying are what Grandma does best (that must be where Mom gets it)! Mom snapped at her more than once, causing Grandma to become even more upset. I still had to get the cake in the oven and no one had remembered to take the steaks out before we left for church. I was busy chopping vegetables for the tossed salad, being sure to set the tomatoes aside, as Brother C. was allergic to them.
It was chaos, to say the least! Mom was running from one project to the next, without completing any of them. On top of that, she was trying to paint her fingernails! How on earth was she going to prepare dinner if she had wet fingernail polish on her hands??? She got up to start another task, so I hid the nail polish instead of arguing with her--I felt like *I* was the crazy one with how she was bouncing around the kitchen! She would ask a question, we'd answer it, and within minutes, she'd forget and ask the same question, then want to argue about us already answering it! I was losing my mind and on the verge of tears! It was like I was running behind her with a small bucket, attempting to put out all these little fires in her wake.
She sat back down at the table again, looking for the fingernail polish. "You don't have time to paint your fingernails, Mom, there's too much to do to get ready."
"Don't tell me what to do! You are not my mother!" she barked. I was slack-jawed at the tone of her voice. Uncle S. stated, "She looks like she's slipped a few gears since the last time I saw her. She's a lot worse." I nodded in agreement.
"Why isn't dinner ready?" "Where's Brother C?" "Why aren't the steaks thawed?" "Where's all the ice?" Mom was running around like a chicken with her head cut off. I thought I was going to lose it before everyone arrived (Uncle S was really early). When Sister M. arrived, I brought her into our bedroom for a quick conversation about how Mom was acting--the chaos and utter craziness! I apologized for not understanding how bad it was, yet I was glad to be there to relieve her of the sole burden of caring for Mom. I broke down in tears and she hugged me. I was sorry I didn't give her more credit, and felt better for being able to hash things out before facing the family. She had confided in me some issues she was having with her husband J., telling me of his pain pill addiction and how he stole Dad's pain pills while Dad was dying. I was shocked! "Yeah, he's been in rehab twice. I told him 'three strikes and he's out,' so he better straighten himself up! So now you can see why I couldn't really deal with Mom on top of what I'm dealing with at home!" I had no idea!
Back to the dinner chaos, Mom snapped at Grandma again about the au gratin potatoes not being ready, yet had an I-don't-give-a-rip attitude about the rest of the dinner preparations. She was getting mad about the steaks not being on the grill yet, and was still ranting about not being able to find her nail polish.
After dinner, and after things settled a bit, I excused myself to walk the dogs. As I returned to the house, Sister M's son N came outside and asked if I knew how to pick a lock--Mee Maw had locked herself in her bedroom and wouldn't answer the door! What??? I rushed inside and unleashed the dogs, then headed down the hallway.
By the time I got to her room, Sister M had found the key and picked the lock. She was standing next to Mom who was lying on her loveseat, chewing her out, saying something about "safety." "Don't you ever do this again! Next time we'll have to break down the door!" Sister M. reprimanded.
I knelt down next to Mom and immediately saw she was upset, on the verge of tears. "Mom, what's wrong?"
Sister M. hissed, "She locked herself in here and wouldn't answer the door!"
I turned back to Mom and spoke soothingly while stroking her hand, and Sister M. took it as her cue to leave. Apparently the stress of the day had gotten to her, and she "had to get away and get some rest." Empathetic, I soothed her and calmed her down.
"She's always being mean to me," she spoke of Sister M, "and treats me like a baby! I can't take it anymore!" Tears welled in her eyes, and my throat tightened as I choked back my own tears. My heart broke for Mom. Yes, Sister M. could be a B, she knew it. All of us siblings knew it! She is definitely not one to have or show sympathy for anyone and chewed Mom out for "being so stupid" (I had gotten a similar chewing out by Sister M. when I refused to put my baby up for adoption in 1991). I simply wanted to hear Mom out, find out what was bothering her, and try to make her feel better.
Mom poured her heart out to me--I felt privileged and honored that she could trust me enough to tell me everything that was bothering her, from how Sister M. took away her car keys after her accident to how her children decided--without her input--that she needed a full time, live-in caregiver (Sister M. said she kept Mom abreast of our discussions, although Mom was "down" at the time and couldn't really make any decisions on her own. I don't know if she was given a chance to voice her opinion, and I'm embarrassed to say I didn't call her to find out for myself.). I lovingly explained to her that we were all just scared for her--we just wanted to keep her safe and to protect her. "Well, Sister M sure has a funny way of showing it!" she cried. "Mom, your safety is our number one priority--Sister M means well, even if she can't show it in a loving manner. I'm sorry."
Mom cried and shared a lot over the next 15 minutes or so. Sister M. really upsets her. I prayed over Mom for several minutes, and prayed over Sister M., that she would learn patience, empathy, compassion, and kindness for our mother. And for others as well.
Mom began to feel better, then had to show me all the new "stuff" she bought when she and Grandma went shopping the other day. Oh great--just what she needs--more clothes! She already has an entire walk-in closet full of clothes she doesn't wear, plus the two closets in the guest bedrooms are full of her clothes, most don't fit and many still have tags on them! Sister M. confided that on many occasions, she had found the receipts and returned all the clothes and Mom was none the wiser. I guess that was a good way to "pick our battles" so that we wouldn't have to argue with Mom in the store. It worked like a charm and I did it many times thereafter!
Eventually, Mom felt better and wanted to re-join the party. A good 45 minutes had lapsed, and everyone had cleaned the kitchen and cut the cake. The birthday boy had already left and others followed. Mom was much calmer the rest of the evening. She was so worn out that she fell asleep on the couch, and I was never so happy to hug my pillow when I laid down to go to sleep. I was exhausted!
I learned several important lessons that day: Mom's bipolar disorder requires lots of structure and patience. I can't lose my cool when dealing with her, because her emotions only ratchet up several notches as she resists any and all instruction or advice. A soft voice goes a long way in calming her down, and she can't handle too much chaos at a time. If she needs to escape a high-sensory environment, she should be allowed to and not be shamed for it, nor have to explain herself. A simple, "I need some alone time" should suffice in the future. Most importantly, based on our personalities, I believe I am the best fit as a caregiver among all the siblings. I feel I have the most patience, sympathy, and compassion to handle Mom's ups and downs.
Sometimes being a Quiet Caregiver has its advantages.
Tuesday, October 4, 2016
Getting to Re-Know Mom
Six weeks after learning of an accident my mother was in with her late husband's truck, my Husband G and I arrived in Maryland to be her full time caregivers. Initially, I was only aware of her Bipolar Disorder, but after living with her for several months, I began to suspect she had dementia as well, although her general practitioner at the time insisted she didn't have it. My Sister M had mentioned that Mom was showing signs of confusion and memory lapses, but didn't seek an official diagnosis for her.
I had moved to Colorado in 1996, to end an unhealthy relationship with my children's father, so I didn't get to visit Mom on a regular basis. I was also considered the "black sheep" of the family, moving out at the tender age of 18 because my parents "didn't understand me." It was because of this early tension as a teenager and young adult that my mother and I didn't share a close bond. In fact, part of the reason I moved to Colorado was to get out from under my mother's thumb and my Sister M's control and constant criticism. She didn't like that I made my own decisions, choices that didn't concern her in the least, so it was better that I lived 2/3 of the country away from all of them so that I could live my own life. Because of my disagreements with Mom, there would be months at a time when we didn't speak. I can count on one hand the number of times my parents visited me during the 16+ years I lived in Colorado. So when I moved back in with her, it was like getting to know her all over again.
Mom's Bipolar Disorder (BPD) had been diagnosed several years prior. I had gotten the story through Mom, who was in denial about her mental health. I imagine her boss at work suspected something was wrong, as Mom accused them of "being against her" and trying to "force her into retirement." Maybe they suspected something and tried to talk to Mom about it, but she didn't want to admit that anything was amiss. The way it all came about, Mom had been at work and broken her ankle. Being in a cast for 6 weeks, she was forced to stay at home, on crutches. The day she went back to work, she broke her OTHER ankle, and was off work for ANOTHER 6 weeks! During that time, at home for 12 straight weeks with nothing to do, she started going through some old paperwork. She discovered that Dad's insurance coverage dwindled after his retirement, along with his pension, so she started worrying incessantly about their finances. She thinks this is when her downward spiral began. She became so obsessed with their finances that she fell into a deep, dark depression, unable to pull herself out of it. Regardless of if the depression was a result of the retirement or vice versa, Mom could not shake herself of the darkness that enveloped her entire world.
Eventually, she started to feel better. Much better. So good, in fact, that she would go on shopping sprees and spend hundreds, even thousands, in one day! Mom and Dad rarely, if ever, argued about anything during their almost 45 years of marriage before he died of cancer in 2007, but I guarantee Dad hit the ceiling when the Discover bill arrived in the mail! He took precautions and, unbeknownst to Mom (or she forgot), opened a separate checking account where he deposited his paychecks from his part time job at American University and all his early inheritance money from his parents. He had to "protect himself" is how the story went (Mom said he was "selfish and didn't want to share his money." She, on the other hand, used her money from the sale of Grandma's house--an early inheritance--to get their new driveway paved). More on that in a later post .... Anyway, she would go through these phases of depression and mania, nearly driving Dad (and my local siblings) up the wall! One day, my Sister M came across an article in a magazine about bipolar disorder and showed it to Mom, "This is what you have." Mom later shared the article with her doctor, and the diagnosis became official. She was started on numerous prescriptions to treat it, but he wasn't a psychiatrist and didn't know what he was doing, so Mom suffered as a result.
The first couple of weeks after arriving in Maryland, I spent observing Mom and taking notes in a "health journal." The day after Husband G and I arrived, the three of us drove to Vermont to celebrate some dear friends' 50th wedding anniversary. Mom did okay the first day, but the second day, she "went down," our mom-speak to say she entered the depression phase of her BPD (if she was in her manic phase, we said she was "up"). She stayed in her room at the bed & breakfast with the curtains drawn, refusing to join us for a cookout on the lake or for meals in the common dining room. I checked on her often, helpless not knowing what to do or how to help her. She assured me this was "normal" for her.
Her general practitioner at the time, Dr. L., had her on a regimen of Klonopin, Olanzapine, and Prozac, among other psychotropic drugs, which I was to change the doses depending on where she was in her manic and depressive phases. It was difficult to keep up with the changes in her meds, but I did my best. I referred to a sheet of paper that Sister M had written up for me (I'll have to find it and update later). I felt like I'd never get the hang of all these medications (13 total), so for Mom to be able to keep up with them was expecting way too much, especially in her mental condition! No wonder she crashed Dad's truck!
Mom was considered a "rapid cycler" in her BPD: she would go up (mania) and down (depression) every 4-6 weeks, give or take a week or two. I charted her cycles on a calendar using yellow and blue colored pencils, and eventually I could predict when she would go up and down within a day or two using this chart and observing her behavior. During her down phases, she would stay in her bedroom, keep the blinds drawn, and either sleep or watch television. Her appetite waned and she would barely eat anything during the first week. After about the second week, she would start to eat again, but not much. She had put on about 30 lbs. since her diagnosis and it bothered her a lot, especially because she maintained a svelte 130-lb. figure and jogged seven days a week before her ankle injuries. She refused phone calls and visitors during her down phase, and regardless of how many messages one left, she would not return their calls. She wanted nothing to do with any socializing and refused to even go to church.
During her manic phases, she was a completely different person! She became a scatterbrained chatterbox, bouncing from one unfinished project to the next! Brother M nicknamed her "Chatty Cathy" during these phases, as she would call everyone in her address book and talk for hours on the phone! She delivered Meals on Wheels with Grandma (this was before Husband G and I arrived), volunteered at the church and at Sister M's school, and helped her neighbors. She would tell strangers at the bank and grocery store that she had BPD, and as a result of having no social filter, she asked them personal questions or shared inappropriate details about herself. It was embarrassing!
Within the first month of arriving, Mom was having trouble keeping steady on her feet. She had to hold onto a shopping cart whenever we were in the store. Bruises and scratches would appear on her arms and legs, but she had no idea where they came from. She would get belligerent if I suggested she needed to hold onto me if she was dizzy, thinking she was "fine" and could "do it herself." Her stubbornness knew no bounds!
On August 31, 2012, I entered the following in her health journal:
The subject of driving came up. Mom said, "Oh yeah, I need you to give me the car keys because I'm driving to church on Sunday."
I was a bit confused. Didn't she remember she was just in a car accident and wasn't allowed to drive anymore? The reason Husband G and I were there was for me to be her chauffeur. "Mom, I can't give you the keys, remember your truck accident?"
"I don't care! That was a long time ago! I'm gonna drive!"
I looked at my husband--I think we were both in shock at her level of belligerence! She was getting upset.
"Mom, I'm sorry, but I can't give you the keys. That's why I'm here."
"I CAN drive! Why won't you give me the keys?"
"Because Sister M told me to take them away. She said I can't let you drive under any circumstances and all of us siblings agree."
"I CAN drive, and I'm gonna PROVE it!"
"Okay, Mom, but only after Dr. L. gives you a Clean Bill of Health in writing, and you pass a driving test at the DMV."
"Okay, you watch! I'm gonna drive again!"
Grandma was no help in this situation. All of the siblings agreed that for Mom's safety, she was NOT to drive again, but Grandma kept putting a bug in Mom's ear, "Don't let them take away your driving freedom!" We really need to get Grandma on board with the safety plan before she sabotages all our hard work!
Mom's dizziness and mobility have become an issue too. She sat on the floor with the dogs and couldn't get up by herself. I tried to lift her by myself but couldn't (she weighs around 165 lbs.). I started to panic, but calmed down and directed her onto all fours, then told her to crawl over to the couch where she could pull herself up and I could help her. It took several minutes, but we got her up!
Minutes later, I was in my bedroom when I heard Mom yelling for me! I dashed into her bathroom and found her on the shower floor! She had fallen and couldn't get up! She was wet and slippery and it was difficult to get a good hold on her. I suggested I call Husband G in from cutting the grass to help, but she refused. I turned off the shower, laid a towel under her so she could get a better grip on the tile floor, I told her to grip the handicap rail, then I put my arms under her armpits and locked my fists across her chest. Between her pulling on the bar and me pulling her up, she was finally able to stand. Her legs were really shaky so I toweled her off, rubbed body lotion on her, and helped her get dressed. She then left with Grandma to go shopping.
I was so overwhelmed by how out-of-sorts Mom was! Who knows how long she's been like this? I can't imagine she had many falls before now, otherwise, how would she have gotten up? Grandma is too weak to be able to help, and Nephew B is hardly around. She's very confused, forgetful, and scatterbrained. She'll start a project, move onto another one, and leave the first project uncompleted. When she's up, she's always talking, talking, talking! I don't know how much of this talking I can handle! I have to escape to my room sometimes. Luckily, Husband G is a talker, so they talk a lot in the mornings.
With the whole argument over driving and Mom's resistance to help, as well as being in denial about her condition, I told Husband G that I needed to talk to someone. He suggested Sister M. "No, I need someone understanding and compassionate." I called Sister N instead. She's just what the doctor ordered! Sister N was very understanding, compassionate, sympathetic, and concerned for me and Mom. I put her on speaker phone so Husband G and I could talk to her. Sister N helped me understand that G and I are the "bosses," we need to make decisions in the best interest of Mom and her safety, such as not letting her have the car keys, and that "whatever we say, goes." As I was talking with Sister N, I realized I should NOT have allowed Mom to go with Grandma! Especially with how dizzy she's been, Grandma is incapable of keeping both of them balanced.
When Grandma and Mom got home later, Grandma told me that Mom had gotten really dizzy and had a hard time keeping her balance! I felt so guilty letting them go off shopping together! This is definitely a learning experience! Later that evening, Mom and I were in the kitchen --I was sitting at the table and she was at the counter next to the refrigerator. I heard, "Oh! Oh! Oh!" and her feet shuffling. In that split second, I jumped up and turned, but she had crashed headlong into the refrigerator, hitting her forehead on the corner! I grabbed her and pinned her against the counter until she could gain her balance. I had her sit in the chair and I put ice on her forehead--that was FOUR falls within 24 hours!!!
Also, when Mom is in her manic phases, she doesn't get nearly enough sleep! She'll stay up all night watching TV in her room, lie down for about 2-3 hours, then get up early and have coffee with Husband G. That may be contributing to her dizziness. And she eats a lot when she's up.
This first month has been filled with new learning experiences. I am usually very quiet and keep to myself. I've always stuffed my feelings inside and rarely speak my mind. I've even hesitated being a proper advocate for my children in the past due to my resistance to making waves, ruffling feathers, or hurting others' feelings, even at the expense of my own. But I have realized that if I'm to be Mom's caregiver, I have to put her safety number one, and I can't let her go off shopping with Grandma anymore unless I accompany them. I have to SPEAK UP, set boundaries, and stick to them! I have to be firm with Mom and not let her call the shots, no matter how loudly she protests! I have to remind myself of what Sister N said, "I am the boss, not Mom!" I don't know if I can get used to this role reversal. This has been a very intense time for me, but I hope to get the hang of it soon. At least I have Sister M and my brothers to help me, and possibly Nephew B and his girlfriend S, who are still living downstairs. I sure hope they get their house built soon, because I don't know how long Husband G and I can live in a small guest bedroom, crowded with boxes and furniture, where I have no place to escape when my senses get overloaded.
I had moved to Colorado in 1996, to end an unhealthy relationship with my children's father, so I didn't get to visit Mom on a regular basis. I was also considered the "black sheep" of the family, moving out at the tender age of 18 because my parents "didn't understand me." It was because of this early tension as a teenager and young adult that my mother and I didn't share a close bond. In fact, part of the reason I moved to Colorado was to get out from under my mother's thumb and my Sister M's control and constant criticism. She didn't like that I made my own decisions, choices that didn't concern her in the least, so it was better that I lived 2/3 of the country away from all of them so that I could live my own life. Because of my disagreements with Mom, there would be months at a time when we didn't speak. I can count on one hand the number of times my parents visited me during the 16+ years I lived in Colorado. So when I moved back in with her, it was like getting to know her all over again.
Mom's Bipolar Disorder (BPD) had been diagnosed several years prior. I had gotten the story through Mom, who was in denial about her mental health. I imagine her boss at work suspected something was wrong, as Mom accused them of "being against her" and trying to "force her into retirement." Maybe they suspected something and tried to talk to Mom about it, but she didn't want to admit that anything was amiss. The way it all came about, Mom had been at work and broken her ankle. Being in a cast for 6 weeks, she was forced to stay at home, on crutches. The day she went back to work, she broke her OTHER ankle, and was off work for ANOTHER 6 weeks! During that time, at home for 12 straight weeks with nothing to do, she started going through some old paperwork. She discovered that Dad's insurance coverage dwindled after his retirement, along with his pension, so she started worrying incessantly about their finances. She thinks this is when her downward spiral began. She became so obsessed with their finances that she fell into a deep, dark depression, unable to pull herself out of it. Regardless of if the depression was a result of the retirement or vice versa, Mom could not shake herself of the darkness that enveloped her entire world.
Eventually, she started to feel better. Much better. So good, in fact, that she would go on shopping sprees and spend hundreds, even thousands, in one day! Mom and Dad rarely, if ever, argued about anything during their almost 45 years of marriage before he died of cancer in 2007, but I guarantee Dad hit the ceiling when the Discover bill arrived in the mail! He took precautions and, unbeknownst to Mom (or she forgot), opened a separate checking account where he deposited his paychecks from his part time job at American University and all his early inheritance money from his parents. He had to "protect himself" is how the story went (Mom said he was "selfish and didn't want to share his money." She, on the other hand, used her money from the sale of Grandma's house--an early inheritance--to get their new driveway paved). More on that in a later post .... Anyway, she would go through these phases of depression and mania, nearly driving Dad (and my local siblings) up the wall! One day, my Sister M came across an article in a magazine about bipolar disorder and showed it to Mom, "This is what you have." Mom later shared the article with her doctor, and the diagnosis became official. She was started on numerous prescriptions to treat it, but he wasn't a psychiatrist and didn't know what he was doing, so Mom suffered as a result.
The first couple of weeks after arriving in Maryland, I spent observing Mom and taking notes in a "health journal." The day after Husband G and I arrived, the three of us drove to Vermont to celebrate some dear friends' 50th wedding anniversary. Mom did okay the first day, but the second day, she "went down," our mom-speak to say she entered the depression phase of her BPD (if she was in her manic phase, we said she was "up"). She stayed in her room at the bed & breakfast with the curtains drawn, refusing to join us for a cookout on the lake or for meals in the common dining room. I checked on her often, helpless not knowing what to do or how to help her. She assured me this was "normal" for her.
Her general practitioner at the time, Dr. L., had her on a regimen of Klonopin, Olanzapine, and Prozac, among other psychotropic drugs, which I was to change the doses depending on where she was in her manic and depressive phases. It was difficult to keep up with the changes in her meds, but I did my best. I referred to a sheet of paper that Sister M had written up for me (I'll have to find it and update later). I felt like I'd never get the hang of all these medications (13 total), so for Mom to be able to keep up with them was expecting way too much, especially in her mental condition! No wonder she crashed Dad's truck!
Mom was considered a "rapid cycler" in her BPD: she would go up (mania) and down (depression) every 4-6 weeks, give or take a week or two. I charted her cycles on a calendar using yellow and blue colored pencils, and eventually I could predict when she would go up and down within a day or two using this chart and observing her behavior. During her down phases, she would stay in her bedroom, keep the blinds drawn, and either sleep or watch television. Her appetite waned and she would barely eat anything during the first week. After about the second week, she would start to eat again, but not much. She had put on about 30 lbs. since her diagnosis and it bothered her a lot, especially because she maintained a svelte 130-lb. figure and jogged seven days a week before her ankle injuries. She refused phone calls and visitors during her down phase, and regardless of how many messages one left, she would not return their calls. She wanted nothing to do with any socializing and refused to even go to church.
During her manic phases, she was a completely different person! She became a scatterbrained chatterbox, bouncing from one unfinished project to the next! Brother M nicknamed her "Chatty Cathy" during these phases, as she would call everyone in her address book and talk for hours on the phone! She delivered Meals on Wheels with Grandma (this was before Husband G and I arrived), volunteered at the church and at Sister M's school, and helped her neighbors. She would tell strangers at the bank and grocery store that she had BPD, and as a result of having no social filter, she asked them personal questions or shared inappropriate details about herself. It was embarrassing!
Within the first month of arriving, Mom was having trouble keeping steady on her feet. She had to hold onto a shopping cart whenever we were in the store. Bruises and scratches would appear on her arms and legs, but she had no idea where they came from. She would get belligerent if I suggested she needed to hold onto me if she was dizzy, thinking she was "fine" and could "do it herself." Her stubbornness knew no bounds!
On August 31, 2012, I entered the following in her health journal:
The subject of driving came up. Mom said, "Oh yeah, I need you to give me the car keys because I'm driving to church on Sunday."
I was a bit confused. Didn't she remember she was just in a car accident and wasn't allowed to drive anymore? The reason Husband G and I were there was for me to be her chauffeur. "Mom, I can't give you the keys, remember your truck accident?"
"I don't care! That was a long time ago! I'm gonna drive!"
I looked at my husband--I think we were both in shock at her level of belligerence! She was getting upset.
"Mom, I'm sorry, but I can't give you the keys. That's why I'm here."
"I CAN drive! Why won't you give me the keys?"
"Because Sister M told me to take them away. She said I can't let you drive under any circumstances and all of us siblings agree."
"I CAN drive, and I'm gonna PROVE it!"
"Okay, Mom, but only after Dr. L. gives you a Clean Bill of Health in writing, and you pass a driving test at the DMV."
"Okay, you watch! I'm gonna drive again!"
Grandma was no help in this situation. All of the siblings agreed that for Mom's safety, she was NOT to drive again, but Grandma kept putting a bug in Mom's ear, "Don't let them take away your driving freedom!" We really need to get Grandma on board with the safety plan before she sabotages all our hard work!
Mom's dizziness and mobility have become an issue too. She sat on the floor with the dogs and couldn't get up by herself. I tried to lift her by myself but couldn't (she weighs around 165 lbs.). I started to panic, but calmed down and directed her onto all fours, then told her to crawl over to the couch where she could pull herself up and I could help her. It took several minutes, but we got her up!
Minutes later, I was in my bedroom when I heard Mom yelling for me! I dashed into her bathroom and found her on the shower floor! She had fallen and couldn't get up! She was wet and slippery and it was difficult to get a good hold on her. I suggested I call Husband G in from cutting the grass to help, but she refused. I turned off the shower, laid a towel under her so she could get a better grip on the tile floor, I told her to grip the handicap rail, then I put my arms under her armpits and locked my fists across her chest. Between her pulling on the bar and me pulling her up, she was finally able to stand. Her legs were really shaky so I toweled her off, rubbed body lotion on her, and helped her get dressed. She then left with Grandma to go shopping.
I was so overwhelmed by how out-of-sorts Mom was! Who knows how long she's been like this? I can't imagine she had many falls before now, otherwise, how would she have gotten up? Grandma is too weak to be able to help, and Nephew B is hardly around. She's very confused, forgetful, and scatterbrained. She'll start a project, move onto another one, and leave the first project uncompleted. When she's up, she's always talking, talking, talking! I don't know how much of this talking I can handle! I have to escape to my room sometimes. Luckily, Husband G is a talker, so they talk a lot in the mornings.
With the whole argument over driving and Mom's resistance to help, as well as being in denial about her condition, I told Husband G that I needed to talk to someone. He suggested Sister M. "No, I need someone understanding and compassionate." I called Sister N instead. She's just what the doctor ordered! Sister N was very understanding, compassionate, sympathetic, and concerned for me and Mom. I put her on speaker phone so Husband G and I could talk to her. Sister N helped me understand that G and I are the "bosses," we need to make decisions in the best interest of Mom and her safety, such as not letting her have the car keys, and that "whatever we say, goes." As I was talking with Sister N, I realized I should NOT have allowed Mom to go with Grandma! Especially with how dizzy she's been, Grandma is incapable of keeping both of them balanced.
When Grandma and Mom got home later, Grandma told me that Mom had gotten really dizzy and had a hard time keeping her balance! I felt so guilty letting them go off shopping together! This is definitely a learning experience! Later that evening, Mom and I were in the kitchen --I was sitting at the table and she was at the counter next to the refrigerator. I heard, "Oh! Oh! Oh!" and her feet shuffling. In that split second, I jumped up and turned, but she had crashed headlong into the refrigerator, hitting her forehead on the corner! I grabbed her and pinned her against the counter until she could gain her balance. I had her sit in the chair and I put ice on her forehead--that was FOUR falls within 24 hours!!!
Also, when Mom is in her manic phases, she doesn't get nearly enough sleep! She'll stay up all night watching TV in her room, lie down for about 2-3 hours, then get up early and have coffee with Husband G. That may be contributing to her dizziness. And she eats a lot when she's up.
This first month has been filled with new learning experiences. I am usually very quiet and keep to myself. I've always stuffed my feelings inside and rarely speak my mind. I've even hesitated being a proper advocate for my children in the past due to my resistance to making waves, ruffling feathers, or hurting others' feelings, even at the expense of my own. But I have realized that if I'm to be Mom's caregiver, I have to put her safety number one, and I can't let her go off shopping with Grandma anymore unless I accompany them. I have to SPEAK UP, set boundaries, and stick to them! I have to be firm with Mom and not let her call the shots, no matter how loudly she protests! I have to remind myself of what Sister N said, "I am the boss, not Mom!" I don't know if I can get used to this role reversal. This has been a very intense time for me, but I hope to get the hang of it soon. At least I have Sister M and my brothers to help me, and possibly Nephew B and his girlfriend S, who are still living downstairs. I sure hope they get their house built soon, because I don't know how long Husband G and I can live in a small guest bedroom, crowded with boxes and furniture, where I have no place to escape when my senses get overloaded.
Thursday, September 22, 2016
The E-mail that Changed My Life
In June 2012, I considered my life in Colorado Springs, Colorado, to be good. I owned my own home, I loved my job as a department manager for a large craft store chain, I was surrounded by friends who loved me, I was deeply involved with my church and a group of women affectionately named "Women of Worth," and at 45, I considered myself to be in the best health I've ever been. I had recently lost almost 100 lbs., I belonged to a women's running club, and had completed two half marathons, among various 5Ks, 10Ks, and other runs. I was unhappily married, but we were getting counseling, and I was heavily involved in the local art scene as well.
But then I received an email that would change my life in ways I never imagined. My youngest sister, "Sister N" sent this:
I just had a really disturbing conversation with Mom. She told me that a couple of weeks ago she ran her truck off the road and thinks it's because of the medication she's on. Praise the Lord she wasn't hurt, but apparently the truck was. This is the second incident (I know of) where she's had an accident because she became disoriented. The first was when she fell at McDonald's and bloodied her knees and face and had a crowd of people and paramedics come to her assistance. When she told me about McDonald's, she said she thought it was because of her medicine but today she said she didn't think it was. I don't know what caused either incident, but I do know that she's currently on 5 different anti-depressants for her bipolar disorder and that if she strays from her regimen in any way, it can be disastrous. I've also been noticing a lot more forgetfulness than usual, as she often tells me that she doesn't remember saying or doing something. I've tried to be very straightforward with her and let her know that something is "broken" with her memory and that she and I need to communicate in writing (on things like visits to California) to eliminate any misunderstandings. I told her today that the side effects of her medicine are very bad and she needs to see the doctor to have them adjusted. I also let her know that I would be emailing all of you to make you aware of her situation. I think we need to see to it that she's fit to drive before she attempts to again. Who knows how the next incident will turn out.
Can we have an email conversation about this? Our schedules don't allow for a conference call, but we need to be discussing this with each other. And Mom needs to know what we're saying and/or noticing about her, if anything. Can one of you in Maryland get her to the doctor? What can I do to help?
I LOVE YOU ALL,
N.
My oldest sister, "Sister M" replied:
The truck incident and the McDonald's incident took place on the same day, which was more like three weeks ago. That morning she had been behind me when I was driving to work and she was driving in the wrong lane. I rolled my window down to indicate to her to get back in the right lane and she did, but then veered off the road on the other side, half in and half out of the lane. She pulled back into the roadway shortly before hitting a telephone pole. I pulled my car over at the intersection of Bowie and Baptist Church, got out of the car, and ordered her to pull over. I asked her what in the world she thought she was doing and told her that she had NO BUSINESS driving if she was having trouble keeping in her own lane. FYI, I have been behind her on a number of occasions and she's always weaving, but never this badly! In fact, I won't let my kids ride with her anymore. Anyway, I told her she needed to go home. She told me she had an appointment to get the cap on the truck. I told her to go another day or let Grandma drive (she was in the truck at this time). She just looked at me like I was crazy. I yelled at her "GO HOME!" She continued to stare at me. I told her if she wanted to kill herself driving, that was one thing, but I was not going to let her kill Grandma so I told Grandma to get out of the truck. I then told mom if she didn't go home, I was calling the police. She looked me right in the eye, put the truck in reverse and went around me, driving on down the road! I took Grandma home and she told me that when she tried to tell mom to get back in the right lane, mom's response was "Don't tell me how to drive!" She didn't even tell me she had wrecked the truck that day. She knew I would be furious at her because I told her to go home and she refused. I only found out because she and Grandma had come to the house and she mentioned that she found out from the insurance agent that she didn't have collision on her Hyundai. Of course I got to thinking and asked her what made her call the insurance agent in the first place. She and Grandma looked at each other and neither said anything at first and then she said, "I had an accident in the truck." She told me that she went off the road and into the bushes. I told her then and there that I thought she was no longer fit to drive a car and told Grandma that I didn't want her riding with her anymore. Grandma said that mom got some medicine from the doctor to help her with her dizziness, and she hasn't had any problems with that since. Don't know if I believe that though. Mom and Grandma are acting like her dizzy spells, disorientation, and forgetfulness are something new. I'm here to tell you they are not. She has been complaining of these symptoms for at least a couple of years now. Her forgetfulness has been for just as long, which is why I've come to the conclusion that, when Grandma passes, Mom will have to go into assisted living. She cannot take care of herself and I don't believe any of us (except for maybe Stephanie) are in a position to take care of her full time. I'm thinking of talking to her doctor to get her admitted to a hospital (Calvert has a very good psych ward), detoxed, and start from scratch. I've had her with several different doctors on all different combinations of medication for 10 years now and no one can seem to get it right!
I'm the middle of the five siblings. I responded with:
Mom told me about this incident shortly after it happened. I have to say she totally minimized what happened, as well as the damages to the truck. I'm sorry I didn't follow up like N did, but it really didn't sound like it was that serious.
She didn't mention the McDonald's incident at all. :( Many (All?) of you know that the only reason I would ever move back to Maryland would be to take care of our parents. Now that Dad is gone, if Mom needs help, the offer still stands. Husband G and I discussed this several months ago and even mentioned it to Mom when she visited us in March. She "joked" (although I think she was really serious but didn't want me to know) that she "needed someone to take care of her, especially if anything happens to Grandma." I told her I would be more than happy to be that person, and she said, "I thought you said you would never move back to MD?" I reminded her that the only reason I would move back is if she needed to be taken care of. I suggested we could live in the basement after [my nephew B] got his house built and moved out, and she agreed that would be a good idea. Over the last several weeks, Husband G and I have toyed with the idea of selling the house, downsizing, and moving, simply because "we can." What better reason to move back to Maryland than to make sure Mom is taken care of? I can apply for a job at nearby stores and I reactivated Husband G's resume for the DMV area. Much to my chagrin, when I read these emails to Husband G tonight, he "suddenly" doesn't want to move to MD, blaming the "job situation." But his current job isn't any better, especially since his hours have been DRASTICALLY cut recently, with no relief in sight. He's worried about the cost of living, but I think if we rent out Mom's basement, we should be okay. He can also do all the yardwork, home repairs, car maintenance, etc. I can take care of cooking, housecleaning, chauffeuring, personal trainer (LOL), etc. Would [Brother C, Brother M, Brother-in-Law J, our Nephews B or R] be able to put in a good word for Husband G at their jobs? He can do LOTS of different stuff and has lots of work experience, not just truck driving. I have to say I was very concerned with the amount of medication she's on, as well as how much she packed when she came out here. Later, when she was "up," even SHE was shocked (and embarrassed) at what/how much she packed, so it doesn't sound like her mental health is going to improve any time soon. I don't think she realizes how bad off she is, or she's at least not willing to admit it. Please, let me know what I can do to help. I don't know if I'm overreacting, or if we'd need to move in 6 weeks, 6 months, or 6 years, but whatever it takes, we're ready! Or even if Husband G can stay here and I just come out for a "prolonged visit," say, the next time she's "down" so that we get a feel for what she needs, we can do that, too. Whatever the case, it's going to take a lot of communication and prayer, so let's get started.
Love you guys! Stephanie
My younger brother, "Brother M" responded:
I only learned about both incidents last week. I am also concerned about Mom driving and she told me that she had received another medication to help her with her dizziness. I also remember that someone said she fell down in the parking lot at the Green Turtle. I remember that she couldn’t even ride the three wheel bike we got her for Christmas so this must be a long term issue with her meds. I know that taking care of Mom is a full time job and one that I would not be able to handle at this time in my life. It is sad but true and I know that [Sister M] has done as much as she can do to the point of frustration. We have talked about taking Mom to a better hospital, maybe in DC. I am willing to take turns with transportation to and from the doctors whenever I can. I thought that she also needed to see a therapist and that hasn’t happened on a regular basis either. I guess the questions really should be: How do we get her to take her medication on a REGULAR basis and how do we get her to therapy on a REGULAR basis? [Brother C] was talking to me last hunting season and said he would be interested in moving into the house with Mom to take care of her. I’m not sure if that offer still stands or if everyone would agree to it (namely, Brother C's wife MA). If anyone is willing to move in to help Mom I am fully supportive and will help in any way I can. I think [Brother C] should have a serious talk with [his son B] about helping out more. I know he works all the time but so do all of us. He knows what he needs to do around there. I don’t think it is out of line to ask him to cut the grass and take the trash to the dump on a regular basis. I think I am way out of the loop on everything. When Mom is down I don’t hear from her and she doesn’t answer the phone when I call, just like everyone else I am sure. When she is up she calls me with a list of items to take care of and then she flies away to visit. By the time she gets back, she is down again. I don’t have any problem helping out with my list of items and I am going to try and do more to help.
My older brother, "Brother C" responded:
Ok, I guess it's time to put my two cents worth in. I think first and foremost we should get mom help with her meds first, if that means putting her in some kind of detox home/facility we should do that first before someone uproots their life to move in to take care of her. She really upset me too when I heard she wrecked the truck because I specifically told her not to drive it until I fixed the brakes! I even had a talk with her when we went to get a new master cylinder for it, I told her I was gonna take all her keys away from her, she didn't try to fight me on it so guess she knows she has a problem. The talk that [Brother M] and.I had about moving into the house at that time wasn't guided on having to take care of.mom because of her condition but more of a financial thing. We both thought that I would be the best sib to move in because I could afford the bills and do all needed upkeep and take care of mom when she was "down." Let me know what you all think of my ideas and maybe we should do some kind of conference call to further discuss this .
But then I received an email that would change my life in ways I never imagined. My youngest sister, "Sister N" sent this:
Hi, guys.
I just had a really disturbing conversation with Mom. She told me that a couple of weeks ago she ran her truck off the road and thinks it's because of the medication she's on. Praise the Lord she wasn't hurt, but apparently the truck was. This is the second incident (I know of) where she's had an accident because she became disoriented. The first was when she fell at McDonald's and bloodied her knees and face and had a crowd of people and paramedics come to her assistance. When she told me about McDonald's, she said she thought it was because of her medicine but today she said she didn't think it was. I don't know what caused either incident, but I do know that she's currently on 5 different anti-depressants for her bipolar disorder and that if she strays from her regimen in any way, it can be disastrous. I've also been noticing a lot more forgetfulness than usual, as she often tells me that she doesn't remember saying or doing something. I've tried to be very straightforward with her and let her know that something is "broken" with her memory and that she and I need to communicate in writing (on things like visits to California) to eliminate any misunderstandings. I told her today that the side effects of her medicine are very bad and she needs to see the doctor to have them adjusted. I also let her know that I would be emailing all of you to make you aware of her situation. I think we need to see to it that she's fit to drive before she attempts to again. Who knows how the next incident will turn out.
Can we have an email conversation about this? Our schedules don't allow for a conference call, but we need to be discussing this with each other. And Mom needs to know what we're saying and/or noticing about her, if anything. Can one of you in Maryland get her to the doctor? What can I do to help?
I LOVE YOU ALL,
N.
My oldest sister, "Sister M" replied:
The truck incident and the McDonald's incident took place on the same day, which was more like three weeks ago. That morning she had been behind me when I was driving to work and she was driving in the wrong lane. I rolled my window down to indicate to her to get back in the right lane and she did, but then veered off the road on the other side, half in and half out of the lane. She pulled back into the roadway shortly before hitting a telephone pole. I pulled my car over at the intersection of Bowie and Baptist Church, got out of the car, and ordered her to pull over. I asked her what in the world she thought she was doing and told her that she had NO BUSINESS driving if she was having trouble keeping in her own lane. FYI, I have been behind her on a number of occasions and she's always weaving, but never this badly! In fact, I won't let my kids ride with her anymore. Anyway, I told her she needed to go home. She told me she had an appointment to get the cap on the truck. I told her to go another day or let Grandma drive (she was in the truck at this time). She just looked at me like I was crazy. I yelled at her "GO HOME!" She continued to stare at me. I told her if she wanted to kill herself driving, that was one thing, but I was not going to let her kill Grandma so I told Grandma to get out of the truck. I then told mom if she didn't go home, I was calling the police. She looked me right in the eye, put the truck in reverse and went around me, driving on down the road! I took Grandma home and she told me that when she tried to tell mom to get back in the right lane, mom's response was "Don't tell me how to drive!" She didn't even tell me she had wrecked the truck that day. She knew I would be furious at her because I told her to go home and she refused. I only found out because she and Grandma had come to the house and she mentioned that she found out from the insurance agent that she didn't have collision on her Hyundai. Of course I got to thinking and asked her what made her call the insurance agent in the first place. She and Grandma looked at each other and neither said anything at first and then she said, "I had an accident in the truck." She told me that she went off the road and into the bushes. I told her then and there that I thought she was no longer fit to drive a car and told Grandma that I didn't want her riding with her anymore. Grandma said that mom got some medicine from the doctor to help her with her dizziness, and she hasn't had any problems with that since. Don't know if I believe that though. Mom and Grandma are acting like her dizzy spells, disorientation, and forgetfulness are something new. I'm here to tell you they are not. She has been complaining of these symptoms for at least a couple of years now. Her forgetfulness has been for just as long, which is why I've come to the conclusion that, when Grandma passes, Mom will have to go into assisted living. She cannot take care of herself and I don't believe any of us (except for maybe Stephanie) are in a position to take care of her full time. I'm thinking of talking to her doctor to get her admitted to a hospital (Calvert has a very good psych ward), detoxed, and start from scratch. I've had her with several different doctors on all different combinations of medication for 10 years now and no one can seem to get it right!
Love, M.
I'm the middle of the five siblings. I responded with:
Mom told me about this incident shortly after it happened. I have to say she totally minimized what happened, as well as the damages to the truck. I'm sorry I didn't follow up like N did, but it really didn't sound like it was that serious.
She didn't mention the McDonald's incident at all. :( Many (All?) of you know that the only reason I would ever move back to Maryland would be to take care of our parents. Now that Dad is gone, if Mom needs help, the offer still stands. Husband G and I discussed this several months ago and even mentioned it to Mom when she visited us in March. She "joked" (although I think she was really serious but didn't want me to know) that she "needed someone to take care of her, especially if anything happens to Grandma." I told her I would be more than happy to be that person, and she said, "I thought you said you would never move back to MD?" I reminded her that the only reason I would move back is if she needed to be taken care of. I suggested we could live in the basement after [my nephew B] got his house built and moved out, and she agreed that would be a good idea. Over the last several weeks, Husband G and I have toyed with the idea of selling the house, downsizing, and moving, simply because "we can." What better reason to move back to Maryland than to make sure Mom is taken care of? I can apply for a job at nearby stores and I reactivated Husband G's resume for the DMV area. Much to my chagrin, when I read these emails to Husband G tonight, he "suddenly" doesn't want to move to MD, blaming the "job situation." But his current job isn't any better, especially since his hours have been DRASTICALLY cut recently, with no relief in sight. He's worried about the cost of living, but I think if we rent out Mom's basement, we should be okay. He can also do all the yardwork, home repairs, car maintenance, etc. I can take care of cooking, housecleaning, chauffeuring, personal trainer (LOL), etc. Would [Brother C, Brother M, Brother-in-Law J, our Nephews B or R] be able to put in a good word for Husband G at their jobs? He can do LOTS of different stuff and has lots of work experience, not just truck driving. I have to say I was very concerned with the amount of medication she's on, as well as how much she packed when she came out here. Later, when she was "up," even SHE was shocked (and embarrassed) at what/how much she packed, so it doesn't sound like her mental health is going to improve any time soon. I don't think she realizes how bad off she is, or she's at least not willing to admit it. Please, let me know what I can do to help. I don't know if I'm overreacting, or if we'd need to move in 6 weeks, 6 months, or 6 years, but whatever it takes, we're ready! Or even if Husband G can stay here and I just come out for a "prolonged visit," say, the next time she's "down" so that we get a feel for what she needs, we can do that, too. Whatever the case, it's going to take a lot of communication and prayer, so let's get started. Love you guys! Stephanie
My younger brother, "Brother M" responded:
I only learned about both incidents last week. I am also concerned about Mom driving and she told me that she had received another medication to help her with her dizziness. I also remember that someone said she fell down in the parking lot at the Green Turtle. I remember that she couldn’t even ride the three wheel bike we got her for Christmas so this must be a long term issue with her meds. I know that taking care of Mom is a full time job and one that I would not be able to handle at this time in my life. It is sad but true and I know that [Sister M] has done as much as she can do to the point of frustration. We have talked about taking Mom to a better hospital, maybe in DC. I am willing to take turns with transportation to and from the doctors whenever I can. I thought that she also needed to see a therapist and that hasn’t happened on a regular basis either. I guess the questions really should be: How do we get her to take her medication on a REGULAR basis and how do we get her to therapy on a REGULAR basis? [Brother C] was talking to me last hunting season and said he would be interested in moving into the house with Mom to take care of her. I’m not sure if that offer still stands or if everyone would agree to it (namely, Brother C's wife MA). If anyone is willing to move in to help Mom I am fully supportive and will help in any way I can. I think [Brother C] should have a serious talk with [his son B] about helping out more. I know he works all the time but so do all of us. He knows what he needs to do around there. I don’t think it is out of line to ask him to cut the grass and take the trash to the dump on a regular basis. I think I am way out of the loop on everything. When Mom is down I don’t hear from her and she doesn’t answer the phone when I call, just like everyone else I am sure. When she is up she calls me with a list of items to take care of and then she flies away to visit. By the time she gets back, she is down again. I don’t have any problem helping out with my list of items and I am going to try and do more to help.
Love you guys, M
My older brother, "Brother C" responded:
Ok, I guess it's time to put my two cents worth in. I think first and foremost we should get mom help with her meds first, if that means putting her in some kind of detox home/facility we should do that first before someone uproots their life to move in to take care of her. She really upset me too when I heard she wrecked the truck because I specifically told her not to drive it until I fixed the brakes! I even had a talk with her when we went to get a new master cylinder for it, I told her I was gonna take all her keys away from her, she didn't try to fight me on it so guess she knows she has a problem. The talk that [Brother M] and.I had about moving into the house at that time wasn't guided on having to take care of.mom because of her condition but more of a financial thing. We both thought that I would be the best sib to move in because I could afford the bills and do all needed upkeep and take care of mom when she was "down." Let me know what you all think of my ideas and maybe we should do some kind of conference call to further discuss this .
Luv Y'all! Your loving brother C :)
Through many more emails and phone calls over the next couple weeks, my siblings and I decided that Mom needed a full-time, live-in caregiver, and that I was in the best position out of all of us to do it. My oldest son lived on his own and my other two children were living with their father and step-mother, so technically, I was an empty-nester, whereas my siblings still had young children at home (Brother C's kids were grown). My Husband G and I quit our jobs, packed our possessions, loaded up our dogs (I was not allowed to bring my cat), and traveled 1700 miles to the East Coast to become Mom's caregivers, arriving August 2, 2012, less than 6 weeks after the initial email. I didn't have enough time to sell my house, as my Sister M said it was "urgent" I move ASAP. Thankfully, my oldest Son M and his girlfriend T, who lived three doors down, were willing to move in so that I didn't have to sell it. That way, when my job with Mom was done (we figured two years max), I would have my house to move back into and life would return to normal.
That was four years ago. I'm still Mom's caregiver. My husband and I separated last year for the third and final time. I thought I'd be back in Colorado by now. I'm not. I am desperate to have my life back, but it's looking like that won't happen anytime soon. So I decided to start this blog to share my experience with others, to share the nitty gritty of being the caregiver of a family member who has bipolar disorder and (now) advanced dementia (according to www.alz.org, Mom is in the late stages of her dementia, although she's not "officially" diagnosed with Alzheimer's). I will try to reconstruct my story as best I can from memory, emails, and journal entries over the years to share what I've learned, and hopefully get the word out that being a caregiver is a stressful, sometimes thankless job. Ann Brenoff, in her article on Huffington Post, says, "No, Caregiving is NOT Rewarding. It Simply Sucks."
More times than not, I would have to agree.
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