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.
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