My ex-husband’s wife had a stroke yesterday. She’s a year younger than I am. Mid-thirties is too young for a stroke.
I’m angry for her. I know what is happening to her right now. She’s in the hospital, she’s scared. Scared isn’t the word – she’s terrified.
I know what he’s doing. He’s sauntering around acting like things aren’t a big deal. He’s showing up and being caustic and sarcastic. He’s making comments about how much it’s going to cost him and how much of a fuss she’s causing. He’s acting like he doesn’t mean it, but she’s hurting because she’s JUST HAD A STROKE AND HE’S MAKING JOKES ABOUT IT!
He took a stranger up to her room today. She was crying because she didn’t know him and it scared her. He didn’t ask the guy to leave, he just let him hang around. Then he went to smoke with the guy for forty-five minutes.
Then while I’m having a nice rant about this, my mother told me that I shouldn’t tell my boyfriend things that would cause him to dislike my ex-husband.
She turned around and said, “I remember that time you cried all weekend because he took off and left you to go visit his old friends in his hometown right after y’all got married and wouldn’t wait for you to get off work.”
I really wanted to say, “Right, and then there was the time I was in the hospital because an ovarian cyst had ruptured, and he wouldn’t come see me because he said I WAS FAKING MY OVARY EXPLODING!
Then there were the times he forced me to have sex with him because I lived in ‘his house.’ Oh, and the time I said I was depressed and felt like dying, and he said I should go ahead and get that over with because he had things to do.”
All I really said was, “You know, he has to know what happened to me or he’s never going to understand why I’m COMPLETELY PSYCHO sometimes.”
Now I’m hanging out, not telling my boyfriend any of these things because, apparently, I can’t use my mouth to tell him things – I get a mental block with words because I’ll cry.
I’m so ashamed of myself for putting up with it, too. Plus, how do you tell the person you love that the person they accidentally introduced you to nearly fifteen years ago did all these things to you? Yep, my boyfriend introduced me to my ex-husband.
And there’s the part where someone I know just had a stroke, and I’m feeling sorry for myself. Oh, I’m feeling bad for her too; I have enough guilt and pity for the both of us!
I’m just going to lay here for a while and determine what feeling to feel next.
Over 5% of Americans are living with Alzheimer’s Disease.
This is her story.
Alzheimer’s is one crazy bitch, just like my mom.
Don’t worry; I’m not an evil daughter, I just decided to take the more, shall we say, “optimistic” approach to my mom’s disease than some people would. Also, I have a very warped sense of humor, which has helped me get through quite a bit throughout my 40 years on this planet.
I’ve already been through my dad’s stroke in my 20’s, Mom’s stroke right after, followed by the death of my first husband when I was 27, my dad’s death when I was 28, my mom’s slow decline into Alzheimer’s Disease, and so much more.
Humor has been my savior and my go-to tool for as long as I can remember. So, please keep that in mind as you read what I’m sharing. Because believe me, my heart breaks into thousands of tiny shards of broken glass when I really allow myself to think of the shell of a person my mom has become.
I miss my mom terribly.
It pains me to talk to her now; our weekly phone calls have drifted into bi-weekly and crossed over into monthly conversations, simply and selfishly because it hurts me to hear her so confused. There is nothing more that I miss than being able to talk to her – really have a normal conversation with her – one that I know she was comprehending what I am saying to her.
Even when I was at war with her in my teen years, I’d take that over what I have with her now. I wish I could have those times back, but I can’t, so instead of being hurt and mortified by mom’s words and actions, I try to find humor instead. Although there are times I hang up the phone and just allow myself to cry for her, for me, for us.
I have decided to blog various stories about mom that have made me chuckle over the years. It’s okay to laugh, I do.
I should have known Mom was drifting toward Alzheimer’s when we went out to eat one night. While the cashier was ringing up our check, mom grabbed a peppermint from the large bowl of candy on the counter. She must have really loved those peppermints because she grabbed another one and shoved it quickly into her mouth while the cashier handed me my change.
I unzipped my pocketbook and Mom unzipped hers. I put my wallet back in to my pocketbook; Mom dumped the whole bowl of candy into her pocketbook and walked out the door.
I was mortified! I asked the cashier “How much for candy?” She just looked at me, shocked, and said “Don’t worry about.“
One day I was lounging around, soaking up the sun, half watching my children swim in our pool and half daydreaming. The phone rang, bringing me out of my semi-comatose state.
“Hello,” I mumbled into the mouthpiece.
“Ma’am,” a Southern gentleman drawled, “is your mom named OCB?”
“Yes, who’s this?” I asked, my suspicion aroused. Who the hell was this guy asking about my mom? How did he get my unlisted number?
**Side note: even in the depths of her Alzheimer’s, she’s never forgotten my home phone number.**
“I’m Clyde, from the Pottery Mart? Over here on Airline Lane? You know it?” he asked.
I could see the big red building clearly forming within my brain. It was located in the town where my mom lived, about fifteen minutes away. They had a large statue of a rearing horse on top of their sign and I often wondered how they had gotten it up there. “Yes, I know it. What’s going on? Is my mom alright?” My suspicion had now turned to concern.
“I reckon ma’am. We don’t want to call the police…”
Police! What the hell is this guy talking about?
“…but it seems your mom has gotten into someone’s car, and she won’t get out. The owner of the car has been real nice and all, but your mom insists it’s her car, but it clearly ain’t; her keys just won’t fit into the ignition. She told us to call you. Can you come down? She seems pretty scared and, well, pretty mad.”
I was dressed and out the door with the kids in record time. On the drive over, never once did it occur to me that my mom had Alzheimer’s. I figured she was merely having an ‘off day,’ which happened from time to time since her stroke several years prior.
I arrived to find my mom sitting in a white vehicle (hers was red), with a gentleman standing alongside and another gentleman sitting on the ground looking a wee bit pissed. I thanked both men profusely, apologized countless times, and sent several thankful prayers up to God that they didn’t call the police or the EMT’s. I was even thankful that we lived in the South at the time and not New York. I managed to talk my mom out of the man’s car (I don’t recall what I told her), and I drove her home. My friend drove her car, and that was the last time my mom ever drove her car, or any other vehicle, at least that I know of, anyway.
This event led me to take her to the doctor for a full work up and her first official diagnosis of Stage One Alzheimer Disease.
Now that I’ve brought you full circle, this fun phone call I had with Mom the other day prompted me to write this novella in the first place:
After going round and round with Mom about my weather on the east coast versus her weather in the central United States, and having that same conversation several times, she asked how things were with my family. She always remembers my boys’ names, but has trouble remembering Peanut’s name because she came along further into Mom’s illness. We talked about the kids for a few minutes, then I shared with her that I bought myself a car.
Out of the blue, Mom remarked, “A car? It must be nice to have a car to drive wherever you want. I wouldn’t know since you took mine away. You know you did. I remember. It was red and I loved it and I shopped in it and I went to the VFW in it. I danced at the VFW on Saturday night. You took it away. Why did you take my car? I went to the craft store in it. I used to go…”
I could sense she was building up steam so I cut her off at the pass and said, “As a matter of fact, I do remember that car, Mom. I gave it to my brother. Aren’t you going to see him at lunch today? You should ask him what he did with it!” I snickered into the phone. I could see my brother now, sitting across the table from my mom and getting blindsided by this conversation. It would be a classic! He gave that car to his son almost ten years ago; who knows how long it’s been out of the family now.
“Really?” Mom replied, “He’s coming up here for lunch. I’m going to ask him about my car!”
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.”
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.
There are only so many things a person can take before they break. Sometimes, there’s only so much a person can take.
This is her story:
When our son was a baby and you went through that rehab program, they sat me down for Family Day and made me come up with an ultimatum to “help” you with your sobriety.
“If you go back to drinking and X happens, I’ll leave.”
I hated it. I didn’t want to say anything like that. I believed there was nothing you and I couldn’t get through together. We love each other very much, and I could never picture a scenario where I would need to leave you.
Since then, you’ve had several medical scares, three suicide attempts, and a second, more intense rehab. You had that spell last winter, where for three days you had no idea who or where you were. Then, after a year of sobriety, you went back to drinking again. I’ve been there for the hospitalizations, your treatments, the roller coaster of your mental illness, and the nightmares caused by the traumas of the things you have seen and done in your past.
I stood by you and loved you through all of it.
I can’t do it anymore.
It’s been a very long time since I’ve been able to really confide in you anything going on with me. You can’t handle it. I had a major emotional upheaval last summer and I can’t even tell you about it because you would never be able to deal with it. It’s still continuing, and it is gaining in intensity.
It’s causing me constant distress, and you have no idea. Because of that, I had a nervous breakdown last winter. I was even having panic attacks. I’m taking antidepressants and seeing a counselor every week to deal with what’s going on with me. You know about my counseling and medication, but you don’t know the real reason why I need them.
While I was still fragile from my nervous breakdown, another horrible incident happened. We were constantly being taken advantage of by your friend. At one point, I was sick with the flu, but you still couldn’t say no to his request. But due to your drinking and your mental illness, you were unable to deal with the responsibility you had taken on that night.
Still very sick, I had to go take care of it and I got stuck in a blizzard. Between my emotional stuff, the flu, all the constant worry about you, and the terror of the white-out blizzard, I had a mini-stroke the next day.
You couldn’t even handle calling for paramedics even though I was incapacitated.
What if it had been something worse? What if it had been a full-blown stroke, or a heart attack, and being able to know you have to call 911 for me could literally mean the difference between my life and my death? What would you do if I died? You can’t even take care of yourself, how are you going to take care of the kids and make sure the bills get paid?
You’ve admitted that you have no hope of being able to quit drinking. You’ve written off rehab, calling it a “temporary fix.” You won’t go to Alcoholics Anonymous meetings and you won’t take any steps to try to stop drinking on your own. Then there was that one night last spring when you were drunk and admitted to me that you still think about suicide all the time.
You promptly denied it once you were sober, but considering that you listed all the ways you had thought about doing it, I’m pretty sure your confession was the truth.
Without you finding a way to stop drinking, it’s only going to continue to get worse and worse. It’s to the point now where we live inside the story of Dr Jekyll and Mr Hyde because you’re a totally different person when you’ve been drinking all day on the weekends.
I know your brain is a scary mess. I know I couldn’t handle five minutes inside your head. You have been through things so horrible that I can’t even process them. It’s no wonder the worst horror movie doesn’t bother you – you’ve been through worse.
It feels like the Grim Reaper has been following you around as long as I’ve known you. On top of all your mental and medical issues, you’re so accident prone. I’ve lost track of all the times I felt like I was looking at the last months, weeks, or even hours of your life.
It has all led to me having to think about your death constantly. I’ve had to plan for the worst. If you were to die in your sleep tonight, I know exactly what to do. I know what to do in regards to your funeral and burial. I know where the kids and I will go to mourn, lick our wounds, and then regroup. I have a plan for what will happen once I get back on my feet. I have hope for a beautiful future.
That future no longer has you in it.
Our kids need at least one stable parent. If things keep going the way they are, I won’t be mentally or physically healthy enough to take care of them. I can’t keep worrying about you. I can’t keep taking care of you.
You and I both believe in an afterlife. I believe that once you have died, you will finally have the peace you’ve never had. I hate that I think about your death all the time. It makes me sick that I have to admit to myself that your death is what’s best for all of us – you, so you can have peace, me, so I can become healthy again, and the kids, so they don’t have to watch you destroy yourself.
I’m purging the house because I don’t want to move all that crap in the basement again. I’ve started a list of the things I will sell when you’re gone. I’ve made my arrangements for where the kids and I will go. I’ve looked into schools there for them. I’ve even figured out places I’m going to apply for jobs. And meanwhile, I pray that God will be merciful and let you die peacefully in your sleep.
Because I know there is only so much more I can take. If I have to break down and just leave, it will break your heart.
And that will definitely lead to you killing yourself.
Today is my dad’s 64th birthday and it’s a miracle he’s here to celebrate it. He’s a Type I Diabetic and has been since he was four years old.
Growing up, I thought diabetes was no big deal, my dad seemed like a regular guy. He water skied, ate chocolate cake and drank Coors Light. If he ate or drank too much, he just had a little extra insulin. It seemed simple and without consequence. The only “drama” was that he almost went blind when I was a baby, but several rounds of laser treatments fixed that. I thought my dad was invincible, which was perfect, because he was my world.
Fast-forward to my senior year in college. I was on a bike ride with my fiance in Southern California, when I got the call that my dad had suffered a heart attack and was in a hospital in Northern California. I pause here to wipe away the tears because even eleven years later, the panic of that memory still grips me. What? A heart attack? My dad is invincible. I peddled hard and fast to get my ass home, packed a bag and drove like a bat out of hell to get to my dad. (Pausing for more tears.)
As I raced across the parking lot, I heard my dad’s voice yelling my name. I looked up to see him hanging his head out the window, waving at me. Okay, he’s still invincible.
My stepmother had driven him to a Kaiser hospital (where we are not members) rather than have an ambulance take him to his hospital. I spent the next several days getting him transferred.
Once in his hospital, he had to have a simple angiogram.
After the procedure, the doctor explained that being a Type I Diabetic had shot his vascular system (a statement I would come to hear many times) and that from here on out things would get dicey. The irony is I didn’t believe him, he didn’t know MY dad, he didn’t believe that my dad was a superhero.
What happened next should have opened my eyes. There was some complication from the angiogram and something went wrong, very wrong. He didn’t look right, he was acting funny. I asked my grandmother to take my younger brothers down the hall to get a soda. I screamed for a nurse. They ran in and assessed him, I stared at the Code Blue button on the wall, I knew it was going to be hit.
The next thing I knew, the room filled with people and a crash cart as we -the family -were ushered out. I stood in the hallway praying, shaking, crying. My brothers, thankfully, had no idea, my husband (fiance at the time) heard the Code Blue call and didn’t imagine that it could be MY dad. hey stabilized him, put in a stint and he was sent home. Then the deterioration began.
Fast forward four years of minor emergencies, medication and doctor’s appointments. I got another one of those calls that makes your blood run cold. Dad had another heart attack and it was major. He needed triple bypass and fast – “the Type I Diabetes had thoroughly shot his vascular system.”
They were transferring him by ambulance to the hospital to perform surgery the next morning. This time, we were three hours away from him My aunt and I took off, driving through the night to make sure we were there to see him before they put him under for surgery. I wanted to donate blood but there simply wasn’t time. I wanted something, anything besides wait. I was a wreck.
He made it through surgery and we were allowed to see him when it was over. He unconscious and still on life-support. I have never seen so many tubes and machines. The equipment that surrounded him, dwarfed my larger-than-life dad.
The next five weeks were tough. When I ran out of sick time at work, I drove up every weekend, sleeping on his bedroom floor, giving my step-mother a break, listening to make sure he was breathing. (I don’t think it was medically necessary, but it was emotionally necessary for me).
On one of these visits, I was upstairs when I heard my stepmother screaming. I ran down the stairs, my dad looked catatonic, she had a phone in her hand that she handed to me as 911 picked up. (Pausing for more tears.)
I explained to the emergency operator that we needed an ambulance, it looked like a seizure, but I wasn’t sure. Of course I wasn’t fucking sure, I was just a terrified girl who didn’t want to lose her father. It was the middle of the night, I said no sirens, I didn’t want my little brothers (who were 6 and 11) woken up to more scary sights.
By the time the paramedics and firemen arrived, my dad had come back. They determined it was a vasovagel reaction from the pain. But they wanted to take him back in, just to be sure. I rode in the front seat of the ambulance because I am protective like that. He recovered from the surgery, but he dropped out of cardiac rehab because apparently, he still thought he was invincible.
As years passed, he did deteriorate as predicted. He has suffered multiple TIA’s. He has no long-term and very little short-term memory. He is bound to a walker. He can never remember the names of my kids or my husband. He can’t be left alone for long periods of time.
Diabetes has caught up but it hasn’t won… yet, sort of.
My dad is still alive today to celebrate his 64th birthday, but the man I knew is gone. Every visit with him is hard for me. I used to talk to him multiple times per day. Now I have to remind myself to call him every couple of weeks. It should be more frequent.
I still panic if the phone rings too early or too late, but in some ways, I don’t have much left to lose. I talk to him to make him happy, but it pains me to see him confined to his wrecked body. I struggle with guilt every day because I should call more, visit more, do more. But I feel empty and I know that is not right.
Sure, there are extenuating circumstances – my stepmother and I have always had a strained relationship. She wanted me there to help with my dad’s recovery, but she doesn’t want me there for family vacations and birthday parties.
They would put me in charge at hospitals and then berate me when it was over for trying to control things. I could go on and on. I could explain that I have a family that needs me with them now. But in the end, they are just excuses why I don’t go more, do more and watch more as my superhero continue to fade away.
Cancer sucks. My grandma, barely sixty years old, died from breast cancer when I was four. Even though I was so young, I still remember watching her suffer. I remember watching my mother and her sister suffer, too. Even though I was young, I still remember thinking if there was really a God, why would he put my grandma through all of this?
She never hurt a soul…and I loved her.
Cancer claimed my mother-in-law, too. I loved her as though she were my blood. Maybe even more than that because she never said a harsh word to me, or as far as I know, about me.
She had lung cancer and yes, she smoked. “I shot myself in the foot,” she said to me when she was diagnosed. She fought like the feisty Scottish lady that she was. She was diagnosed around Thanksgiving and lost her battle that following June.
Just about six months. DAMN! It was so quick! I know it didn’t seem so quick to her.
She went through chemotherapy and all of the horrible shit that went along with it. She did everything she was supposed to do. She did everything right. And then they found cancer in her brain. The woman never took a fucking pill in her life and here she was having fucking brain surgery! She made it through the surgery. My sister-in-law and I went into the recovery room and damn it if that lady wasn’t sitting up and talking right after having her skull busted open.
While she was in rehab, she had a stroke. It was a kind I had never heard of. It was progressive so it started out slowly. She knew what was going on.
Chef and I went to visit her in the hospital and at that point she said she had had enough. She said to us, “if they find any more cancer, I don’t want to be treated.” If she had known that she only had six months to live, she would have said, “Screw chemo,” and gone to visit her grandchildren in Wisconsin.
I know that because she was an open book. She had no secrets. What you saw was what you got.
The next day she could not speak.
We were the last of her children to carry on a conversation with her. When the doctors finally determined that she had had a stroke and that it was progressive, my sister-in-law decided to bring her back home. The doctors said she had less than a week to live, so she would come home to be surrounded by her children, grandchildren and her beautiful antiques.
My husband and his sisters took care of her for that week. Because my children were so young, I stayed home and came for the weekend. My two year old daughter stood by my mother-in-law’s bed and spoke to her. She called her “gammy.” My mother-in-law would grunt occasionally. Sure enough on day seven – just a week after we had our last conversation with her – my mother-in-law lost her battle.
I ask the question once again, forty years later… if there was really a God, why would he put my mother-in-law through all of this?