Being a caregiver to a loved one is one of the most gut-wrenching things a person has to do.
This is her story:
I’ve been contemplating blogging for quite sometime. I’ve been afraid to for several reasons, but to rattle off a few: anonymity, vulnerability, and pure avoidance. I have a fear that if I actually put the feelings/circumstances/questions out there, it means I actually have to deal with them. Thank you Aunt Becky for starting this blog…so I can get my toes wet.
From what I can tell of this space, many are dealing with loss, mostly stemming from the unfathomable experiences associated with childbearing/loss/postpartum/depression and the host of other issues those of us who are now “adults” face. I would like to add another sad layer to party – dealing with caring for someone whose mind and spirit are being slowly ripped away through Alzheimer’s Disease.
My mother, the beautiful, talented, smart, amazing hero of my world, is slipping away. I cannot say things like…she has had a full life, this is part of getting older etc. You see, she’s only 61 years old. We are at least 5 years into this battle (it took most of those 5 years just to get a diagnosis) and it feels like this freight train is traveling full force. Every day, for my mom, is the best it will ever be. Tomorrow, some different aspect of the person she is today will be gone. For now, she knows me, she knows my kids, she know she is my mom. She doesn’t remember where she lives, when the last time she talked to me was, whether or not she fed the dog (yes, at least 5 times now) or how old the kids are, let alone that she just told me the same story for the tenth time in a single conversation. It can be so frustrating, but I have to constantly remind myself…today is as good as it gets.
I need an outlet…and hope this can be one. Caregiving, whether its for an infant, child, spouse, sibling or parent, means giving more of ourselves than we ever thought we could give.
And that comes at a price. I look to you, fellow fighters, for insight, laughs and support. I promise to give it all back.
I am in celebratory mood. Divorce can be a sad and stressful time for may people, but for this particular fruitloop it’s a cause for much celebration.
Hands up anyone who’s tried to divorce a narcissistic psychopath. OK, so in the absence of my being able to actually see you right now, I guess I should give the heads-up for anyone who suspects that they’re married to a narcissistic psycho and wondering how to achieve such a mind-blowing coup.
Rule Number One:
Just remember, you can’t divorce a narcissistic psycho because they won’t let you. Use reverse psychology. Apply for a divorce. Wait about 8 weeks before they slap an anti-suit injunction on you. Haha! that’s a good one, because they don’t want you to divorce them, they have to divorce you.
Rule Number Two:
Be damn sure you have money to burn. I’m talking eye-wateringly, serious amounts of money that could be used for something far more constructive like your children’s education or your shrink bills. You’ll need the best lawyer you can afford. Firstly, because you have to deal with someone who is more cunning than a friggin weasel and has the charm of one of those guys who do tricks with a snake in a basket. You simply must have a lawyer who’s got teeth and balls. Frisk the bugger’s crotch and ask him to open his mouth. I’M SERIOUS. We all know though, that lawyers with a full set of teeth and mammoth balls don’t come cheap.
Secondly, remember… the psycho will always try to out-do you. They simply have to have the best lawyer. It’s a matter of entitlement. So, you can’t be caught with your pants down and relying on the legal skills of a toothless, impotent, eunuch when he wheels in the big guns.
Rule Number Three:
Patience. Be prepared for the longest, most acrimonious, frustrating, expensive, divorce and settlement in f**ing history. The narcissistic psycho will get these expensive lawyers to communicate about all possible minutiae from weekly letters regarding access to the dog, to a spreadsheet showing who owns the contents of the bloody refrigerator. I jest not! Oh, and you’ll need to sort out that anti-suit injunction.
Rule Number Four:
Keep your marbles intact. There will be times when you get to read and respond to their 100th solemnly sworn affidavit, and you’ll wonder if you’ve lost the plot. These things are amazingly convincing works of fiction, and reading them will make you want to vomit…you’ll probably want to slit your wrists too! DON’T. Sure, they’ll contain a grain of truth, but the truth will be so twisted that you’ll doubt your own sanity. Reach for the diary, the photographic evidence, the forensic accounting report and the bloody Valium….but keep your marbles intact.
Rule Number Five:
When the decree absolute comes through, and he sends you a pompous message reading “I find it so very pleasing that I have finally stopped your divorce and divorced you” …….f**ing well CELEBRATE! You will be finally free of the bastard.
Today, I celebrated with a spot of fly posting around the village. This weekend I am having an enormous party.
BECAUSE DIVORCE IS EXPENSIVE….. BUT FREEDOM IS PRICELESS!
Nobody has ever said that pink walls and pastel artwork helps those with cancer cope.
This is her story:
Have you ever wondered who chooses the artwork hung in your doctors’ offices? The first time it occurred to me was when I had an ultrasound on my breast–having already been diagnosed with breast cancer (my daughter was 8 months old, my son was 3). The walls were pink, the paperwork was pink, the robes were pink. And on the walls held ungodly Georgia O’Keefe knock-offs. You know what I am talking about…the “blossoming flower” (wink wink).
In the “Women’s Imaging” center that day, the color scheme and fallopian-tube flower work was as if to say “Hi, you have cancer, but if you gaze long enough upon theses soothing feminine images, you won’t mind as much.”
Good Lord.
Two months later, I visited my mother at the at a prominent cancer treatment facility 90 miles away. She had been diagnosed Stage IV colon cancer only a few weeks before my breast cancer diagnosis. I walked into a wide, long room hosting at least thirty patients in big, lazy-boy recliners. Each person was “under the bag” (cancer-speak for getting chemotherapy), faced toward the center of the room where sat the biggest fish tank I have ever seen. I mean, it was obscenely big—jutting out into the middle of the room in all of its aquatic resplendence like a big middle finger flipping off every cancer patient.
All of those people, their lives distilled down to hours spend under a chemo bag force-fed aquatic serenity—as if they were children in a pediatrician’s office—easily distracted by shiny bright objects floating in water. Something tells me not one of those people felt better about the fact they were getting chemo because they were looking at a fish.
When I stepped into one of the private rooms to see my mom she, too, reclined in a chemo chair—sick. A whisper of the woman she once was. And above her, one badly painted picture of…a lily pad. I went on over the next few months to my own cancer treatment. I took notice of the floor to ceiling photographic murals of “peaceful scenes” in my oncologists’ minuscule examination rooms.
When I lay down on the table my toes nearly touch the nose of a fuzzy bunny in a field in Exam Room 1; a doe grazing in the dew of a spring morning in Exam Room 3; or the tepid water of the pond holding LILY PADS. Right next to the medical chart of the female reproductive system is an 8foot x 8foot wall of LILY PADS!!!!!
I kid you not.
I thought it mere coincidence until I was received further treatment at a nationally renown university cancer center. Waiting room? Fish tank. Exam room? LILY PADS!
By this time I’m pretty sure these lily pads and fish tanks are some sort of secret code for kind of insurance we all have. Or portals into a fourth dimension. What is the art work like at HIV clinics, or pediatric cancer units, or prostate cancer centers? Thrusting erect shapes in dominant tones? Exactly how is someone else interpreting our fears for us and prescribing certain images to calm us?
I don’t know about you, but when I walk into my oncologist’s office I need to either see Lenny Kravitz working behind a Starbucks cart or Johnnie Depp, shirtless, handing out Valium if they want me to get my mind off of why I am there. Fish tanks, lily pads and Procrit squeeze balls key holders to the women’s room don’t cut it.
Can you imagine if every woman diagnosed with cancer walked into a doctor’s examination room and given paint and a blank wall? I doubt we would find one freaking lily pad…ever. What would you paint on your doctors’ walls? What would your mother have painted on the walls of her doctor’s offices?
And don’t get me started on the images for pregnant women…I have been a birth professional for nearly a decade, and I have NEVER seen a woman dilate more when gazing upon a protruding petunia.
Screw the pastels—we are women for god’s sake, stronger than any other element in nature.
It was a beautiful Memorial Day Weekend a few years ago. I had gone with a good friend to the Indianapolis 500. I was very recently divorced and my son, age 8, was with his dad at an amusement park fairly close to our house. I had just returned to the area when my ex-husband called with a pretty horrifying story. His normally tough-as-nails mother had called him, hysterical, saying something about a pool, but he couldn’t make out anything else she was saying. He was on his way back to town, but in the meantime asked me to look for his mom.
So, I did. I think I knew all along what I would find. I knew my brother and sister-in-law were having a pool installed for my niece and nephew, ages 5 and 8. I stopped at a couple of places where I knew they hung out with no luck, so I headed for the hospital.
I went to the ER desk and told them who I was looking for. Just the last name, mind you. Immediately, the front desk person said I could come in the back. I didn’t know that meant really bad news. I said, “No, I can wait out here, no problem,” but she insisted. Into the back I went, and immediately I was confused. There was my mother-in-law, surprisingly calm, or so it seemed. I went to her, and she said it was my niece, it had been the pool where the football cookout had been held, my niece had been missed but there were too many toys in the pool to see her at the bottom.
A lot of the aftermath is a blur now. I went to my brother and sister-in-law, who were holding my niece’s body. She looked perfect and beautiful, but blue. I remember my sister-in-law looking at her almost reverently. I remember sitting on the curb outside the ER, waiting for my ex-husband to get there so I could tell him. I remember my son’s horrified face as he saw her as it sunk in that he would never argue with her again over who got the middle part of the back seat. And I remember the feeling of absolute hopelessness that I couldn’t protect him from that, or from the other ugly things in life.
That night, something broke inside me. I went to bed that night knowing things would not be better in the morning. My sister-in-law’s wails echoing in my ears.
It’s been years now. My sister and brother-in-law are doing as well as I think anyone could and I was diagnosed with PTSD. I thought I had a good handle on it, but I got a comment from someone that brought it all back. This person told me she hoped someone in my family, like my child, got sick so I could understand why she missed a ton of work.
Growing old is optional, growing old gracefully even more so.
My mom did not have it easy in the last 5 years of her life. Her first problem was with her sciatic nerve, which first caused pain then weakness in her legs and eventually left her dependence on a wheelchair. I tried to keep in mind that she was in pain, scared and unsure during the times when she seemed to be going the extra mile to be as difficult as possible, but I wasn’t always successful.
After my father passed (Mom went just 4 yrs later), my mother became a shut-in. This was pretty much by choice. We lived 4.5 hrs apart, I’m an only child and we have no relatives who still speak to us living nearby. She refused to consider moving and her house looked liked something you’d see on “Hoarders,” but that’s yet another story. She wanted to live completely independent of help, especially mine, because this was the first time in her life that she was on her own, so I think she wanted to prove to herself that she could.
Did I mention “shut-in?”
She was defiant, she was determined to be independent and she was lying…I had a 74-year old teenager on my hands.
She ordered food through Amway. She bought her clothes via catalogs. She banked via the mail. She had a few friends who would come over and check on her most days, but the situation was far from ideal. Her mind was not the best, but she was sharp enough to lie to me about anything that didn’t show her situation in the best of lights.
For instance, she never told me about the time she fell and had to call the neighbors to help her up. She never told me about the time, in a very confused state, she called 911 in the middle of the night because -best I can piece together- she had a dirty diaper and was having trouble changing it herself. The cops busted the front door open and were not at all pleased to find her in no actual danger.
She did tell me about the time she called 911 for a ride to her doctor’s appointment, only because she felt a grave injustice was being done. Something had happened with her scheduled special needs ride, and she reasoned that if the doctor needed to see her then she needed to take an ambulance. She had received a bill for $700 for that non-emergency ride and didn’t think she should have to pay it. I did talk her into paying the bill, hoping she’d learn her lesson.
I tried mentioning the idea of assisted living, but she wouldn’t hear it.
“They beat you and lock you in your room!” she screamed. Eventually, I convinced her to get some in-home elder care and a woman would come by three times a week for three hours at a time to cook, clean, and run errands for her. Finally, I could get the low-down on her condition from someone who would be honest with me.
This started out well, as Mom enjoyed having someone to talk to and she was now getting fresh, home-cooked meals instead of the packaged crap she ordered via the mail. But, it didn’t last. I got a call from the coordinator to tell me my mom was hitting the workers. She was also being verbally abusive. At one point, Mom chased a worker out of the house, screaming at her from the front door.
I got emails from a friend of Mom’s who had visited her, only to find her crying hysterically, saying “I hate my life!” and hitting herself in the head. When asked about it the next day, Mom acted surprised and said nothing like that had happened.
Then, Mom came down with a bad cold that required someone to stay with her while she was ill. The elder care folks were great and worked out schedules so that she was tended 24/7 until she got better. Problem was, despite appearing to hate these helpers, once Mom got better, she didn’t want the 24/7 visitation to end. In fact, now she was refusing to let them leave. I’d have been fine with the additional help, but we could not afford the $10,000 per month for very long.
I had to talk with Mom and tell her it had to stop. This did not go well, and there were tears, but in the end, she cut back to 1 visitation, 5 days per week.
The pain and weakness in her leg was getting worse, and it was spreading to the other leg. We talked to a number of doctors, but she didn’t like most of them and liked even less what they had to say. Finally, after yet another fall that she still would not admit to, she was in the hospital again. Her doctor convinced her to have back surgery, and at last she agreed. She was hell on wheels both pre- and post-surgery. She had a fear of falling that was off the charts.
When the nurses tried to move her in the bed, or, heaven forbid, try to get her to stand up, she’d scream. I’m talking hear-her-down-the-hallway screaming. I’d leave the room and stand outside biting back tears whenever anyone tried to work with her.
When she was well enough to leave the hospital, she went to a rehab facility to help her get back on her feet as much as possible. It was there that some medical genius, who I’d kiss on the lips today, put her on anti-depressants (yeah, I know, “what took so freakin’ long?!” – she refused them before because she didn’t want to “take dope”). Mom became a bit more reasonable and a little easier to deal with. More like heck-on-wheels. When I asked her why they put her on the happy pills, she said “so I’d stop screaming.”
Hallelujah!
During rehab, her doctor spoke with me, informing me that she could not live on her own. Preaching to the choir, sir. So, through hook, crook and threats of Adult Protective services, I got her to agree to move “temporarily” to an Assisted Living facility near me. I found a really nice place a mile from my home and they assured me that the beatings would be kept to a minimum. (Joke!)
We moved some of her favorite things up and set up her two-room apartment to look really nice and homey. When she got out of the hospital we drove her straight to her new home. Despite hearing how horrible it was, we watched her start to enjoy life again. She was making friends and playing Bingo every day. God forbid you came by during Bingo hours, only did THAT once.
Mom *loved* the call buzzer and actually wore the one by her bed out, because she used it so much. She still managed to keep things lively. I got a call from her one Easter morning, telling me she couldn’t move her leg and perhaps she had had a stroke. “Should I go to the hospital?” Well, the normal answer would be “Hell YES!” but I had learned to ask. “Why didn’t the nurse call the ambulance for you?” I ask. Mom said that they wanted her to check with me first. None of this was adding up, so I told her I’d be right over. When I got there she was wheeling around her room, fully dressed and looking fine. I asked which leg it was that she could not move. “This one!” she said, bouncing the leg up and down.
Her behavior continued to become more erratic, and I got a call that I never thought I’d get. Mom was flashing her boobs at the male help and at some poor, unsuspecting wheelchair repairman. Oy. A doctor was brought in and a diagnosis of dementia was made. This only pissed her off. She accused the facility and the doctor of telling horrible lies about her. “I’d never do that!” she yelled.
In the end it really was a stroke that took her. The weekend of Thanksgiving she had a massive stroke affecting half of her brain. She had her 78th birthday in the hospital, but was not aware enough to know it and she passed just a few days before Christmas.
I’m still working on cleaning out the house, but it is getting close to being done. I avoid driving by the assisted living place, still too many bad memories. I can laugh about Mom flashing the help. It’s two years later and I’m finally getting to the point that I don’t jump when the phone rings.
Nobody has ever said that pink walls and pastel artwork helps those with
