Guest Blogger: The Single Gal or Dating and Dementia
June 4, 2009
Karin and I got to know each other in our New York City support group. She’s incredibly funny, super smart, and a just beautiful woman with a dog who didn’t jump on me once at the Alzheimer’s walk last year. Karin is navigating the interesting world of dating. Dating with a demented parent is not easy. The inevitable “parent” question is bound to come up and you can either lie: “mother is on the junior league and volunteers her time to the poor and orphaned children.” Or you can go with the truth: “my mom shits herself and spits on the floor at Target. What did you say your mom does again? Junior league and orphans, eh? That’s terrific. Check please.”
I wanted to share Karin’s story because she is doing the dating thing in a very open, honest and brave way. Navigating a world that is already filled with challenging situations, awkwardness, and plenty of weirdos is hard, often times sucky, and just plain exhausting… of course, there are a few good ones out there… if you meet them, hold on to ‘em… but Karin is dating and she’s doing it with NYC balls, sass, and always grace. The woman is tough and amazing. I give her credit. Airing your dirty, or rather, demented laundry isn’t easy and can quickly end any first date… but can you blame anyone for walking away? I often wonder, if I get through this and meet someone going through this very same situation, would I want to take another walk though hell even if he is holding my hand?
Karin’s story:
I am currently single, looking to find the man who will be my mate, lover and best friend, all rolled into the perfect package. The whole process of “dating” requires that you open yourself up to a virtual stranger, and let them into your world to see if you want them to continue to be there, and if they want to continue to be there. Inevitably—what feels like sooner rather than later—the question of your parents comes up. I used to consider just outright lying, “Yes, my parents have been happily married for 40-years,” but as a smart fellow support group member (Susan) told me, if they can’t accept my mother (and family situation) for what it is at the beginning, it’s doomed to fail.
Since receiving that bit of advice, I now respond with the honest truth. I have no relationship at all with my father (parents divorced when I was young and haven’t seen him for the past 15 years or so), and my mother has Alzheimer’s disease. She has no idea who I am, what my name is, or that I am her daughter. She requires full time care, drinks her meals because she has “forgotten” how to swallow, and wears diapers.
Before becoming sick, my mother was the strongest woman in the world. She worked a full time job, then came home to support and raise my brother and I—on her own, with no real support to speak of. The mother who raised me is my hero, and everything my brother and I are today is because of her. On the other hand, the person who resides in her body today is a stranger, someone I choose not to see because I want to remember who she was, and not be left of memories of this shell of my mother.
Sometimes, while out on dates my mother’s aide or day care program will call and those are calls that I have to take as they come, never knowing what the latest crisis may be. I have learned to take and deal with those calls in front of dates—as embarrassing as it is for me. I can sometimes look at someone after I’ve hung up the phone, and just know that its game over, won’t be seeing him again. Other times I am shocked that my date wants to know more about the situation and is supportive of me and my mother.
Since my mother’s diagnosis, I have not yet been in a relationship where I have had to talk about the fact that this may be a genetic disease. That conversation frightens me for so many reasons. Having that conversation means that I will have to address the reality that I may one day be like my mother (this was her fear as well, and here she is today, just like her own demented mother). It also means I will have to tell a potential mate, that if they choose to spend the rest of their life with me, in thirty years, give or take, I may be just like my mother. Worse yet, I may pass on these faulty genes to our children.
Like any other 31-year-old single New York City woman, I’ve come to learn that dating has its ups and downs. I’ve also learned that we all have our faults. But I do believe that I will one day soon find my “better half.” As excited as I am to find him, it upsets me greatly that the woman who is responsible for making me who I am today will not be able to share in the joys of my future.
Image from Flickr by Adam Foster: http://www.flickr.com/photos/paperpariah/
Inside the Bin
May 24, 2009
My mom is currently residing at a geriatric psychiatric unit. She is wearing diapers. She is pleading with everyone to get out, and she is running for every open door. What led to her “commitment” (it’s a temporary deal until her meds are properly adjusted) at the psych ward was a series of disturbing events that even I wasn’t prepared for. I continue learning that it can always get worse.
Mom had only been at the home for a little over a week, but during that time she was banging on doors, becoming aggressive with the other residents, breaking her picture frames, and she even tried to make her great escape. Despite being demented, she was clever enough to walk out the secured door with a family who was on their way out after visiting a family member. This little Ecuadorian broad made it out into the lobby before she was apprehended and returned to the confines of her memory care unit. Dammit. I went to her. I went before work and after work. I tried to calm her down. I tried to reason with (yes, I know). I hoped my visits would put her at ease—just knowing that I was there, that I was coming by, that I was near—I hoped would give her some comfort. My efforts did absolutely nothing. She stuck her hand down her diaper. She tried to wash out her butt with water, next she sat on the toilet and showed me her poop. And in a moment of lucidity, she said: “You did this to me. You put me here. Why did you put me here?”
The woman got to me. I thought I was detached enough… in fact, I was scared that I was too detached. I didn’t cry when we placed her. I went home and watered the dirt in my garden. I rarely weep for my mom. When she pleads with me for something, I won’t budge. I won’t cave. I just do the job that has to be done and try to get on with the everyday bullshit of life… you know, the one where I get up, go to work, and pretend to be normal.
And so it goes…
The nurse and owner of the home had wanted to send her to the psych unit in hopes stabilizing her mood… specifically her anxiety and aggression. I knew it had to be done if she was ever going to adjust and settle into her new home. I hated the idea of it. Still, I want her to be as content as she can be… even if it means forgetting about me, my dad, and the life we had—for better or worse—together.
“I am crazy, I am crazy… I wanna drink. I am crazy, I am crazy…” The skinny old lady sitting down singing I am crazy over and over and over and over again had a giant needle inserted into her arm while clear fluid dripped down a tube and into her vein. She wore brown socks.
Susan had no hair, but a generous amount of chin hair. She was a’ight. Wearing bright pink PJ’s and with her blinged out shades on, Susan wheeled herself over to my mom and told her that she loved her. “I love you. I love you.” My mom hugged her. “God bless you. Is that the door?”
When I arrived earlier, I found my mom walking around with a hospital sheet covering her shoulders. She knew who I was. “Mihijta, I am going home with you. OK. Let’s go.” The nurses wanted me to stay to talk to the doctor. Mom isn’t exactly the most coherent person on the planet these days. She mixes up English and Spanish with random words that make no sense. For the most part, I can understand some of her nonsensical language, but other times, I nod my head in agreement—“atiyunoue thedrfiop ewpombnc da’peuld aseftghing?”
I’ve never been inside a looney bin. Seeing my mom there, laughing at nothing. Waving at some invisible being and insisting we hold the door open for this friend of hers was just plain weird. The doctor had a heck of a time with her. When we walked out of the tiny room where he evaluated her, I asked him if he thought she was demented. I don’t know why… sometimes, I don’t know what’s normal anymore. He said she is severely demented. Late stage.
His diagnosis made me feel better. Gave me some strange comfort because it means I did the right thing in placing her at the home and consenting to her going into the bin. I think you just reach a point where you lose your internal compass, like you just don’t know what’s up and down, north or south. You think certain behaviors aren’t that bad. You think, “well, she’s not that far along.” You think, “oh, she’s always been like this.”
She’ll be inside the bin for about a week. I hope we can get her stabilized. I hope she can participate more fully in this final chapter of her life.
My mom is slowly destroying me. I don’t sleep well. I am getting a talking to at work about expectations next week. I am tired. I can’t focus. I can’t think. I moved out her to make things better. I could not fully participate in or heal my relationship with my ex-fiance. My demented mother is taking down the entire ship. How do you care for someone who you don’t even recognize? How do you show love or compassion to this woman who is really a stranger. I vaguely recall what she was like before becoming demented. How do you willingly walk into a psych unit when you know she is draining you of energy? She has the power to destroy me. She gave me life, a life I should appreciate and participate in more fully… yet when I think about death and dying, it doesn’t scare me. Instead, I think peace and quiet.
~Photos taken by Meredith Farmer, http://www.flickr.com/photos/meredithfarmer/
Happy Mother’s Day
May 12, 2009
Not really. Not for my family. Not for me. Not for her. Not for my dad. Our Mother’s Day sucked. Instead of brunch with mom at her favorite restaurant or an afternoon at home filled with laughter and love and pink carnations, we took my mom to her new home: A nursing home. Happy Mother’s Day indeed.
Of course, she had no idea it was Mother’s Day. I told her it was Mother’s Day. It just didn’t click in her plaque infested brain.
I knew placing her on that day or any day would be tough. I knew I would have to lie to her. I knew I would probably have to wander away while she was distracted by the staff. I knew she would be upset. I knew she would yell. I knew it would be incredibly difficult. Maybe the hardest day of all of our lives.
What I was not prepared for, and what is branded in my brain is that moment when my father took her hand in his as we walked into the facility—Dave and Margo never held hands; in all my 32 years I cannot recall a single hand-holding moment—followed by that awful second when she finally realized her room was filled with family photos and her favorite dresses. I can’t even begin to describe the look of horror and confusion on her face. “I want to go home now. Let’s go. Where is the fruits?”
Talk about a Come-to-Jesus moment.
She was sitting on her bed when she looked over to the nightstand and saw photographs of me and her sister. “Why are these here? These are mine. That’s my mother and mihijta. Why are they here?” My mom took the photos and wrapped them in the long sleeve shirt she was wearing. Then, she carefully placed her framed photos in her purse. Next, she saw her dresses hanging in the closet. “These are mine. This is my…” She took them out of the closet and walked out the door. My dad sat on the bed. He looked so tired and sad. Defeated. Exhausted. Pale. Drained of life.
After she came back into the room, I was trying to convince her that this is what the doctor wanted. That this would be good for her and that the staff would help her feel better. “Mom, this is only for a little while… just until I come back from New York (a lie) in two weeks. Yes, yes. I’m going to see my ex husband (her word for my ex boyfriend) and get back together (a lie).” She was happy about that story line. It was the only time she smiled. She prays for that particular scenario to come true. Still, despite my efforts, she wasn’t sold on staying. “No. No. No. I have to go home and feed my fruits. No. I can’t stay here. I have no idea how to go home. I have to feed my fruits.”
As I showed her more of the room and the lipstick I bought her (she carefully applied it to her chin and lips), my dad walked away. My turn. When she realized he was gone, “Davo, my Davo, where is my Davo???? DAVO!!” the staff took her down one hallway to look for him and I was taken down another hallway and out of the home.
I went home that afternoon and worked in my half-dead garden. My dad called me to check in. He was shaken. He quickly got off the phone when his voice cracked… he was on the verge of crying. I called him later that day and he sounded a little better, not much. It’s been two days and I haven’t cried.
I can’t feel much of anything. I don’t feel sad. I don’t feel happy. I just am.
I play my part in this world. Right now, I have several roles: daughter, wife, husband, decision-maker, and therapist.
Dementia doesn’t just change your loved one. It changes YOU. But not just the course of your life, it alters your DNA. I am not the person I was four months ago. I am not the person I was six, nine or 12 months ago. And this latest experience has so profoundly changed me. Today, on this fine Tuesday morning, I don’t even recognize myself.
Every cell has been altered.
I am a different person.
