Today is my Mother’s 65th birthday. I knew I would eventually write about her, and her birthday seems like the right time to do so.
My goal for this blog is to share positive life experiences through my writing. But not everything can be positive. My Mother is one of those subjects that involve painful memories laced with hurt, anger and confusion. There really is no way to discuss her without it being sad from both her perspective and mine, but I will attempt to write this in the most positive way I can manage.
She lives in a nursing home, suffering from early onset dementia. Her diagnosis came when she was only 58 years old, and it was a shock to everyone who knew her. Especially me. After she finally left her severely abusive 2nd husband (notice I did NOT call him my step-dad?), she was a single mother who was tough as nails, worked hard and struggled to make ends meet. She also suffered from mental illness, in and out of mental hospitals several times throughout my childhood. I believe she tried her best, I’m sure she loved me in her own way, but she was not a loving person and her way was harsh and demanding. Her parenting style didn’t involve being kind, protective or nurturing of me, her only child. As just one example among many, we lived in a small mobile home in Florida, with no central heat and air. She installed a window unit AC and a wood burning stove in her bedroom, but padlocked the door so that I couldn’t get in. It was a rare occasion for me to be allowed in that room even when she was home. If I went into detail about what that felt like, or what her motivation might have been, which I’ve thought about a lot over the years, the old hurt in my heart would need to justify her behavior. For many years I thought that for me to heal from the wounds of my childhood I needed to empathize, understand and forgive those that damaged me. Now that I am an adult and a mother myself, I realize that to justify her treatment of me is harmful. To blatantly show a child that their needs don’t matter, to treat them as if they are unworthy of sharing your basic comforts…what message was that suppose to send? That I somehow deserved to be treated that way? That is exactly what I learned, but I know now that I didn’t deserve it, no child does.
I’ve found an amazing book that deals specifically with daughters growing up in similar situations. It’s called Daughter Detox, written by Peg Streep. It is a powerful book for someone like me, and Peg is a huge source of inspiration for not only me, but thousands of others like me (and some men too she wanted me to add. ). I’ve only read the first half of her book so far, about understanding the different ways a mother might damage her child, and the science behind how the child adapts. The first half was eye opening, and has helped me see a truth about my life that I never have before. I’m still not ready to move on to the second half, which deals with examining these adapted behaviors and changing them. Once I’m finished reading the book I will write a review and share it, loudly. Back to Mom. I moved out of her home for the first time when I was 15. In the years that followed, I returned periodically but only for short periods. My bedroom became her office, so I slept on the living room floor when I did come home. This may be partially why I never stayed long. She went back to college part-time around work, graduated with her Juris Doctor degree from Florida State University, becoming an attorney, when I was in my early twenties. She worked so hard, and did so well! She was very intelligent, and I was so proud of her. Her success didn’t change our relationship, though. We were always distant. I lived my life, she lived hers. We spoke on the phone periodically and I came home to visit on holidays. We saw each other three times a year, four at most: sometimes Easter, Mother’s day, her birthday, and either Thanksgiving or Christmas.
Eventually I had a family of my own, she had her career and was in a serious relationship. At some point, maybe while I was pregnant with Skylar in 2008, her boyfriend reached out to me to express his concern about Mom’s behavior. He said she was acting strangely and that he just wanted to let me know. Honestly, I didn’t think much of it. Mom was a strange duck. She always had been.
In early 2011 I received a phone call from a long time friend who said “Your Mom needs help.” Mom had been her attorney for years, and they had just returned from court. She told me Mom couldn’t remember how to get in the car, in court she didn’t know what paperwork she needed, she didn’t remember how to address the judge, who got very angry and threatened her with contempt. Then she lost her briefcase and caused a huge scene in the courtroom, accusing someone of stealing it, when it was on the table in front of her the whole time.
I began speaking with her on the phone daily, and it didn’t take long to see that although she was trying to hide it, something was in fact very wrong. She was still practicing law, and making big mistakes. She was accused of stealing and/or misappropriating money from a trust she was responsible for, and was also forced to file bankruptcy, which she couldn’t manage on her own. My husband, kids and I moved back to our hometown so I could be close to her. Within only a few months she could no longer practice law, or remember her own phone number and address. She got lost in Walmart a time or two, so I did the grocery shopping for her. In those early days, she could still function to put her own groceries away and use the microwave to heat up her meals. That didn’t last long, though. Soon she had forgotten how to use the microwave and refused to take a bath. Eventually she forgot about the refrigerator, or that there was food to eat at all.
I am an only child. Her boyfriend left. She had no friends to help her. Even my husband refused to get involved. I was literally the only person in the world willing to help her, and that was out of obligation and came at a huge emotional price. Becoming the caregiver to an elderly parent is difficult enough, but for her to be so unexpectedly helpless at such a young age and considering our relationship, it was a hard situation to wrap my brain around. She had no health insurance and no money, which made getting her diagnosed and approved for disability a huge challenge. The Florida Bar intended to disbar her for misconduct, but I proved her declining mental healthy and they allowed her to voluntarily give up her license to practice. We went to court for the bankruptcy. I fought the Department of Education because they were deducting student loan payments from her disability, even though the disability meant she was entitled to have the debt discharged. The experience really opened my eyes to how easily an elderly and/or demented person with no one to advocate for them can get lost in the system and become a statistic, just another homeless person on the streets. By this time I was a single parent, and it was exceptionally difficult to manage the responsibilities of my children, our animals and my job plus my mother, her home and bills, the doctors appointments, all the paperwork necessary to get her the services and benefits she needed, not to mention her two dogs, two cats and a horse.
I cared for her as best I could for over three years, but I refused to move my children in with her. I made the decision when I had the girls that I would be the best mother I could be to them, making them my first priority. That I would put their needs above all others, including Mom, who yelled at them and scared the dickens out of them on a regular basis. They moved too quickly and were too loud, it frightened her and in turn she frightened them. Instead I got an emergency alert “button” for her to wear around her neck that also had an intercom for me to listen in, I delivered three meals a day, bathed her, dressed her, brushed her hair and took care of the house. Then I’d go home and do it all over again for my kids. Some people said I should do more. Other people said I should do less. I suffered a tremendous amount of guilt. I felt like I wasn’t doing enough, but emotionally I was doing the best I could for everyone involved. I was constantly exhausted and I felt anger because I had to be the one to step up and take care of her, when she had barely taken care of me. And then I felt guilty for feeling that. I wrestled with suddenly having to “mother” my own mother, and believe me when I tell you she did not allow that gracefully! Her personality never changed throughout the entire experience, she was just as difficult as she always has been, possibly more. She fought me on everything and argued with every decision “Why do I have to take a bath? Who cares?” In the end, I had to do what I thought was right. Ultimately my decision to care for her had everything to do with the type of person I want to be, and very little to do with how she had treated me. That’s a done deal and she is already in hell.
When I finally decided the time had come to place her somewhere, it didn’t come lightly. I let her stay in her home for far longer than I should have simply because I didn’t want to be the one to make the decision. “Please, someone tell me what to do!” I toured a facility in a neighboring county that had great reviews. The place was clean and everyone seemed nice. Unfortunately they gave me really bad advice on how to handle the transition with her, but I didn’t realize it until later. I had never gone through this before, and was relying on them to lead me through it.
They kicked her out. After only 24 hours they said they weren’t equipped to handle her, loaded her into an ambulance and sent her to the hospital. They gave her bad reviews so no facility within three states would accept her. After three weeks in the hospital I was told she couldn’t stay there any longer, either. Boy was I mad. If an entire facility designed and trained to care for people like her can’t do it, how the hell can I? The hospital called in Hospice as a last resort, who told me what I already knew “She doesn’t need hospice, we can’t help her.”
On the day I thought I would be bringing her home, I was scared silly. I had no idea how I was going to manage this, as her condition had declined severely in the previous weeks and I had no help. By some miracle, the phone rang as I stepped into her room. A representative from the facility in our home town was downstairs and wanted to meet her. They had reconsidered. Halle-freakin-luja! She moved in the next day. That was three years ago, and as you can imagine her condition has declined significantly since then. She can’t walk, talk or even chew and swallow her food. And it is still crazy emotional for me. I hate to visit. I still do, but it’s out of obligation. We can’t exactly have a conversation, and I usually sit with her rattling on about my life and she cries. And cries. It’s heartbreaking, and I can only guess what she’s thinking. As miserable as it makes me, it doesn’t seem like she enjoys my visits either. And I feel guilty about that. And I visit less. Then I feel guilty about that.
Birthdays and holidays are especially tough because I have no idea what to buy as a gift. Clothes, obvi, but she has tons of clothes already. I’ve hung art on her walls and put plants in her room. New bedding and flowers. I keep a current calendar over her bed, and photos of her grandkids. I’ve purchased baby toys, soft and reactive. That is really hard, to shop for her in the baby section?! But anything hard is dangerous…the one thing she can still do is bang things, on the table and on herself.
I’ve been thinking about this day for weeks. I considered a cake, but she is on a pureed diet. I don’t want to torture her by giving everyone else cake! A giant box of balloons? The sentiment would be lost on her.
Finally I decided the best thing to do is make sure everyone at the facility knew it was her birthday. Before work this morning I took her gifts (clothes) in a pretty bag, flowers, balloons and I put a pink satin sash across her chest that announced she is the “Birthday Girl.” My hope is that even though she can’t speak, and we don’t know if she can hear or understand, she felt the love and got a million Happy Birthday wishes from random smiling faces all day long. Because everyone deserves to be celebrated on their birthday.
