The Cycle

It starts again. The cycle. The never ending punch in the gut, jolt to the heart, baffling cycle.

The first stage:

Denial

“Have you talked to mom?” The question I hate to hear when one of my four brothers calls.

“Yes.” I close my eyes before I ask, “Why?”

“She just seems,” sigh, “Out of it.”

“No. I haven’t noticed.” I lie.

Then I end the call and pretend it never happened. I go about my day. I play with my children. We do homework. I cook dinner for my family, a mediocre, limp mess that we call a meal. I sit in my chair at the kitchen table, fork some food into my mouth, chew, and swallow, all the while trying to push her illness away from my reality. I smile at my son as he tells me something really important about one of his Lego Star Wars characters and nod my head feigning undying interest. I wipe my daughter’s mouth and ask her to use her fork and listen to her hum a song she learned at preschool. We all sit and eat, and I pretend it’s not happening. Again.

It’s not happening again.

It’s not happening again.

And so on until she reaches the next stage … everyone’s favorite.

I’m back!!!

My phone rings. I look at the name. “Mom” lights up. I want so badly to hit the red Decline button, but I can’t. I cannot ignore her call. I long to hear her voice, to feel her, to hold on to just a little bit of her normal, so I answer.

“Hi, mom,” I say and hold my breath.

“You’re coming to see me Spring Break, right?”  She says, rapidly, faster than her usual Southern drawl.

“Um.  I haven’t thought about…”

“I’m cleaning out my closet,” she interrupts, “Do you want that brown suit that I bought with you at Dillard’s? You could use it for work.” Flight of ideas. Keep up. It’s not always easy.

“No, mom. I don’t work anymore.” I haven’t worked in 7 years.

“Oh.” She pauses, trying to make sense of that in her head but only briefly.Onto the next thought. “I’m so alive right now. I’ve never been better. Did I tell you? I’m back. I’m back, and I’m better than I ever was. I have so much energy. I stayed up until 6:00 this morning, organizing my closet. Organizing my cabinets. Organizing the laundry room.”

I picture my childhood home always tidy and neat, immaculate actually, and then I picture her organizing, her new way of organizing.  Her clothes drape over her bed and litter the floor next to her closet. The plates I ate so many meals from stack on top of each other on the kitchen counter next to the silverware and her cast iron skillet, the one that she used to make me fried okra and French fries anytime I requested. Her prized teapot collection no longer collects dust in her antique display cabinet.  Pieces of it scatter all over the house, unmatched. She uncharacteristically went on a catalog shopping spree and spent almost a thousand dollars on junk. My parents’ formal living room couples as an advertisement for the As Seen on TV store. I imagine my dad rubbing his lips together, kneading the soft wrinkled skin on his forehead back and forth with his fingers, trying to ignore the mess … the clutter … the illness.

“I’m glad you’re feeling well.” I lie. She’s not well. We all know it, but she feels great. Some synapse in her brain rapidly fires over and over and sends her on a temporary high. A high that she feeds on, that she enjoys, that makes her look “crazy” to the outside world, but just fragile, porcelain plunging to tile about to shatter in a million pieces, to me. She will break. Soon. So I brace myself. And I hold onto her happy, to her synthetic high with all of my force from behind my phone.

“I love you, mom.” I say, swallowing the huge lump in my throat.

“I love you, too.”

“I know.”

I know.

I know.

And I do, which is why I can handle the next stage:

Anger

Her name lights up on my phone for the eighth time today. I sigh. I can’t do it. I can’t pick up and hear what I know she is going to say. I can’t, but I do. Every time. Because I can’t ignore my mom.

“Hi, mom.”

“I don’t know what your problem is.” She spits at me.

“I don’t have a problem.” I say, grinding my teeth.

“You and your dad are assholes. Do you think I’m a child?” Says the preacher’s wife who rarely uses profanity. Sick Mom has no filter. Sick Mom uses words Well Mom would never, ever say.

She heard a conversation that took place between my dad and me, one where we were trying to decide what to do with her. She’s abused my dad to the point where he can’t stand it anymore. She hates him, hates the way he smells, the way he looks, the way he breathes, the way he walks, the way he sleeps, and she tells him this. Every minute of every day. I fear for him. I know that she would never hurt him, the well she, but the sick she hates him, and the sick she often references things like butcher knives and frying pans, so I speak to my father every morning when I first wake up to make sure that he’s still alive.

That’s what sickness does to a family. It makes it doubt the legs on which it stands. It makes it doubt the heart that makes it beat. It makes us doubt our mom. And it’s terrible.

“No, mom. I don’t think you’re a child.” Even though we sort of treat her like one. My dad unplugged the stove to keep her from catching their house on fire. He disconnected her car battery so that she can’t drive away when he isn’t watching. We whisper behind her back and tiptoe around her, not wanting to strike her ever ready match. We make plans for her without her approval. But we don’t think she is a child.

“Mom.  Please stop being mad at me.”

“You know what?”

“What mom?”

“Your husband should leave you. He should take your kids and leave and never look back. Those kids deserve better than you. And so does your husband. You don’t appreciate him at all.”

“I know, mom.”  Because agreeing makes the conversation shorter, and I’ve heard this at least four times today. She’s also told me that I’m a whore and a piece of shit and the worst mother on the planet.

She’s angry with me because last time this happened, I made the decision to put her in the hospital, the one she calls “the loony bin,” the one she refuses to go back to, the one that did nothing but make her worse. I hate myself for making that decision, but we didn’t have a lot of choices. My brothers weren’t brave enough to do it, and she became too much for my elderly father to control, and frankly, I didn’t want her to kill him in his sleep, but that I don’t tell anyone.

She also does not understand why I cannot visit her, why I won’t allow my children to see her this way. She can’t understand. They need to remember the well Nana. The Nana who always kept candy in her pocket and secretly handed them a piece each time I turned my back, the Nana who sang “The Itsy Bitsy Spider” off key but with joy and giggled every time the song ended, the Nana who would sit and hold them on her lap, rocking in her chair, reading them books, content to have the chatter of children all around her, who played hide and go seek, who threw the baseball in the back yard. The Nana whose laugh was contagious and the best sound on earth.

“I’m sorry that you’re mad at me, mom.”

“Sure you are.  You don’t care about me.”  And with that, she abruptly ends the call.  I put down my phone. And I cry. Because my mom is sick, and nobody can answer the question:  “Why?”

She’ll call me at least twenty more times this day, and I’ll answer every time. And I’ll listen to her assault of words because she’s my mom, and I know she doesn’t mean it.

I know she doesn’t mean it.

I know she doesn’t mean it.

And I brace myself for the next stage. The worst stage of all.

The lights are on but nobody’s home

“Mom” hasn’t flashed on my phone screen in days. Yesterday, on her birthday, I called her, and we spoke.  A simple, “happy birthday, mom,” conversation. I said, “I love you,” and she said, “I love you, too,” and we ended the call. That was yesterday.

Today is my birthday. On normal birthdays, my mom calls me and recounts my birth. She tells me for at least the 35th time that she went into labor with me at her birthday dinner, two days late. They rushed to the hospital where she continued to labor with me over night.   “Everyone from the church was there, and all I wanted was to be left alone,” I hear her voice in my imagination, her normal well voice, tell me, “My room was full of people,” and she goes on to tell me who was there.  She labored all night and then finally, with no aid of medication, she delivered me at 9:35 the next morning. The doctor announced, “It’s a girl,” and the room fell silent. A girl after four boys. “If you would have been another boy, I think I would have told them to put you back in,” her normal well voice tells me with a chuckle, normally.  Normally, on my birthday, my mom and I talk about her going into labor on her birthday with me, “the best birthday gift she ever got.” Normally, but not this year. And not last year. Because my mother forgot my birthday. Again. It’s not her fault. It’s because of the illness. It’s because of the sickness in her brain that we cannot explain.

But it doesn’t hurt any less. Because it’s our thing. Our birthdays … our birthdays are … special.  I’m the best birthday gift she ever got. Remember, mom?

Remember?

Remember?

But she doesn’t. Her brain has checked out. And she doesn’t remember.  She doesn’t even know if she brushed her teeth this morning. She stands at the sink and pours herself a glass of water, forgetting to turn off the faucet as water pours over the side of her glass and splashes her hand …and she doesn’t know it.

I’ll check my phone a thousand times today, and her name won’t appear.  She forgot. It’s okay, I tell myself.

It’s okay.

It’s okay.

She’ll get better. She’ll come back. She always does.

Until then, I’ll ferociously go through my card box and try to find one from my mom. A card with her voice, where I can hear her, the real her, the well her. And I’ll read every card she’s ever given me. And then I’ll find a little gem in the box, a note that she put in a pile of mail she sent me when I first moved to Dallas thirteen years ago. And there she is. Just like that.  Two simple sentences.

“Here’s your mail, sweetie.  Sure do miss you so much. Love, Mom”

I miss you, too, Mom.

So much.

hands -The Cycle

 

293 thoughts on “The Cycle

  1. I remember having similar feelings when my grandmother was diagnosed with Alzheimer’s. It is a very difficult thing to watch someone you love deal with the physical and mental repercussions of the disease. I got to a point where it became too difficult to visit her (even though I did) because she was not the same person…she wasn’t “Normal Grandmom” anymore. I can understand your desire to have her back and to be close with her again. Thank you for sharing you story. Prayers and hugs to you and your family!

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  2. This was heartrendingly beautiful, and I know it must have been so painful to write. My heart hurts for your pain, and I wish you strength to take care of yourself, and to protect yourself from the hurting words and deeds of sick mom. I have gone through similar circumstances with my mother, who has dementia. In fact as you described your mother’s behavior, I was certain it was dementia. Then I read through the comments and saw that she exhibited some symptoms throughout your life, so that may not be the case. Anyway, please know you are not alone and that your eloquent sharing of your experience will help others, as well. I truly believe that the more we share these kinds of experiences, the more people understand and recognize signs of trouble in time to perhaps make a difference.

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  3. The writing you portrayed is so emotionally close to my heart, and is something that should be shared throughout as many of us go through the heart wrenching pain of our family members experiencing dementia.

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  4. Thank you for sharing, your writing resonates with me, as my mother is bi-polar. I wish that, at age 51 now, and my mother aged 77, that I could offer you some hope. I’d encourage you with knowing that I believe the time we have on earth, “a mere vapor in the wind” that our “Good Mom” will be with us someday in Heaven! Please cherish the “good mom” times, and your reward will be in heaven.
    Blessings & Peace, Explorerhawk.

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  5. This is a great piece that really delves into the intimacy you share with your mother and her illness. Thank you for sharing. My mother suffers from schizophrenia, I had to live with and manage her illness for many years

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    • Does your grandmother’s dementia mirror my mother’s at all? I just wonder how many other people are going through the same kind of cyclical episodes. I’m sorry you and your grandmother have to tackle this monster of an illness. It’s not easy. Stay strong.

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      • Yes, my grandmother’s Dementia is very much like your mum’s. The phases sound also the same. She is now at the point where she doesn’t know who we are anymore. She sometimes has nervous and erratic episodes and we need to calm her down, sometimes with the aid of medicines. It is now so serious we have hired someone specially to take care of her and to watch her every move. My heart goes out to you. Stay strong.♡

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  6. This post made me cry and I don’t even know anyone directly who suffers from dementia. It is such a terrible disease and I think one of my greatest fears – I can’t imagine what you are going through living inside it on a daily basis.

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  7. You poor thing. I know, it`s hell. My family went through it with my grandmother. She hid it for years, kept phone conversations short, and was always upbeat.
    The only reason we found out that her dementia was out of control was because my grandmother`s neighbour contacted us and told us all the strange things my grandmother was doing.
    My mother is on a new drug that slows down the process. I dread the day I call my mom only to find out that my mom has been replaced by a stranger.
    I wish you all the best. It`s not easy.
    Sometimes writing about it makes it easier… but not really.
    I`m so sorry for your pain.

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    • Do you mind if I ask what drug your mother is taking? So far, the drugs that they’ve given my mother have done nothing, but she lives in a small West Texas town, and I’m convinced they’re not offering her everything there is. Or maybe it’s wishful thinking. Either way, if it’s not too personal, I would love a recommendation.

      Thank you for reading. I’m sorry your family suffers from this disease, and I hope that the stranger never finds your mom and that you get her for the rest of her life.

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      • Awww, thank you so much! I`m not sure what it is. However, I`m going to visit my mom for a few days, I`m leaving Sunday. We are about 3 hours apart, so I don`t see her all the time. I`ll write it down and let you know as soon as I get home.

        Unfortunately, my mom doesn`t have a computer, so I probably won`t get back to you until Wednesday. Also, she`s not good with giving information. For example, if I called her and asked her what the medication is called, my mom would say: “ok, hang on I`ll go look for it”… then my mom would scramble around the house, go to her kitchen cupboard go through about 20 pill bottles… She has all these prescriptions that she never uses.. then, she`d come to the phone and spend 15 mins trying to pronounce me the name of the drug… lmao… It`s true, I`m not exaggerating.

        Did they prescribe the drug to your after she started having symptoms? I know that my mom started taking it a few years ago. I think you have to take it prior to getting the onset of alzheimers/dementia. Once it sets in, it`s too late.

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      • Oh, no worries. I just wondered what she might be taking and if it was something that could benefit my mom. They have only prescribed drugs for my mom that treat her symptoms (the ones that mirror Bipolar) but they haven’t given her anything specifically for her dementia. Thank you again, and I hope your visit with your mother goes well. Safe travels.

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  8. You have written this very well and I do understand what you are going through. I was a nurse in Alzheimer unit and understand this behavior. I can’t believe the pain you must feel. Your inner strength comes from knowing your mom when she was caring and nurturing. Some people never have that chance in their life. Prayers are with you.

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    • Thank you for your prayers. Ironically, in college, I volunteered in the Alzheimers unit, and I saw so many of the patients exhibit the same behavior that my mother is showing. I can’t even think about the fact that this could turn and probably will turn into full blown Alzheimer’s It’s such a terrible disease. As awful as it sounds, I told my dad when they first loosely diagnosed her that I would almost rather it be cancer so that there would be some sort of a plan or at least a prognosis. I keep holding onto the faith that she’s going to pull through.

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      • Take care of yourself while you are going through this. My prayers will be with you. Sometimes it seems so unfair. My sister passed with ALS. It was so sad to see everything shut down but her brain. She could not talk and she would become so frustrated. Sometimes you just ask yourself why does this happen. I don’t know but thank goodness she had a family that stood by her.

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  9. My grandmother has the early stages of dementia and it is heartbreaking to feel so helpless on the outside as we watch her deteriorate on the inside. I think one of the hardest illnesses is that of the brain…losing the person you loved, not physically, but mentally. This was beautifully written and I found myself trying to hold back tears. Thank you for sharing.

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    • Thank you for reading. I hope your grandmother is getting the right medication to hopefully slow down the process. This disease needs more attention and more research. Our elderly population is deteriorating before our eyes, and nobody seems to be doing anything to stop it.

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  10. You kept me engage all through it… reminds me of my Grandfather before his demise. I was the only grandchild he remembered. Sometimes he even forgets some of his children. On the good days, he calls all of us to ask how we are doing… and when he is off, he looks like death was sitting beside him and having a chat. oh! how I hate those days when it was gloomy and without hope… This too shall pass, keep remembering the good days when Mummy was her real self…

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  11. Mental illness is like the bubonic plague in my family. I ready this and my gut ached, it ached for you and it ached for me – for my future, one that I could see clearly in your writing as if you were predicting a few years out for me. My mom was just diagnosed with dementia and my brother kicked off the year by taking his life. Thank you for sharing your suffering–we are never alone. I’m sending you a virtual hug.

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    • Oh no. I’m so sorry to hear about your brother. Death is hard enough on it’s own, but when it’s done in that way, it makes it so much more difficult. I’ve grieved due to suicide more than once, and my heart goes out to you and to your family.

      I hate to hear this for your mother and for you. I wish so badly that this disease didn’t even exist, but unfortunately it does. And unfortunately, our family continues to ask questions that seem to get no answers. I hope for you and your mother it is different. I know there is a medication that is supposed to help with early stages, so maybe you can ask her doctor about that. In the meantime, I advise you to make sure someone in the family who is responsible and who she and you trust has medical power of attorney so that someone is always an advocate for her.

      Sending you a virtual hug back. We should keep in touch.

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  12. Well, I’ll mark this post as the best read of the day, for me. Reasons to it are many .. I could actually relate to it not because my Mom is sick ..but it gives me the idea of how the sickness syndrome changes the person almost entirely. A heart-throbbing piece it is . Looking forward for such stuff. Be in touch.

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    • Thank you for reading and for the nice compliment on my writing. I am so sorry that you can relate to this, but I hope that you and your mom have a better experience with her sickness. We should definitely be in touch. It’s always good to have a another person who understands the weight that we carry with this.

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  13. This was heartbreaking and so beautifully written. Thank you for sharing. I can relate to this in so many ways 1) my grandmother has dementia and is living in the late stages. I remember when she was in the earlier stages and the types of phone calls we received, the paranoia, the yelling, the fear. 2) I work in the Alzheimer’s field so I hear so many stories like this every day but each are unique in certain ways, since the disease doesn’t affect everyone in the same way. 3) some aspects of her behaviour resonate with me so much…I was just diagnosed with bipolar disorder a few weeks ago and the anger, the random energy and reorganizing, and manic highs, are very similar to what I’ve been experiencing. My heart goes out to both you, your family and your mother.

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    • Thank you. My mother’s physicians are treating her for symptoms that mirror bipolar disorder (the anger, the random energy, the reorganize) but they have yet to diagnose her. We, as her family, feel that is has been an underlying and untreated issue for years. Luckily for you, there are many treatments for Bipolar, and my hope for you is that you can find one that offers you the highest quality of life possible. I think the combination of the two (Bipolar and Dementia) have made if even more difficult to find a treatment that works for my mother, which is why this cycle continues.

      I wish for you and your family that your grandmother wasn’t going through this. It is a heart-wrenching disease that I’m finding has very few answers. Best of luck to you and your family.

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  14. Geez.. this sure is well written.. I came here just by some coincedence and found myself reading this right to the end..
    Mental illness (in germany called ‘Demenz’) is something I am thinking about a lot since last year. I started recognizing this with mom. First I was just wondering about questions being asked twice in 1 hour and now I guess she does have some smaller ‘outs’ now and then. I am scared and it hurts, but I will have to get used to it, when it gets worse. Your text will be a great help for me. Thank you for sharing your honest thoughts! I wish you and your mom a lot of good moments!

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    • I hope that your mother doesn’t deteriorate too quickly. There are several drugs out there that can help with that, but I’m not sure what any of them are. I certainly wish that we would have seen these signs earlier and done something for my mom sooner before it got to this point. I will, however, continue to be her advocate and try to get her the very best care for her illness. Thank you so much for reading and for sharing your story with me.

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      • I responded several days ago because my mother is suffering with dementia, but didn’t mention the drugs she was prescribed. She has been on a drug called Aricept (actually, she is on the generic version, Donepezil) since she was diagnosed in July of 2012. Actually, I think she had been experiencing symptoms much farther back than that, but we went into denial, as many do, especially when we are far away. In January of 2013, we moved my mom about 20 minutes away to assisted living, and her new Dr put her on another dementia drug called Namenda, in addition to the Donepezil. Suffice it to say, it possibly slowed down her symptoms a little, but honestly, there is no drug out there yet that really has much of an impact. In fact, Mom’s doctor has just removed her from both drugs as they were not making a difference, and they were causing some side-effects, such as anxiousness, and the inability to articulate her thoughts. Anyway, they are worth a try. They definitely seem to impact each person differently, and they may help your mother.

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      • It is so frustrating that there are not more medications for this horrible disease. I am considering moving my parents closer to me since I seem to be the one who steps in and tries to advocate for her care. I am sorry that your mother’s medications are no longer working. Actually, I’m just sorry that you are experiencing this in any way. Stay strong, and if you ever need to vent, you know how to find me.

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      • I offer the same to you, if you need to vent or ask questions, you can find me at curvyroads.info. I don’t write about my mom much anymore, although I did some when I started. Honestly, I haven’t been writing anything at all lately. At this point, it is mostly a matter of watching her deteriorate. I lived your experience of seeing her name and number on the phone and dreading to answer. Now, she doesn’t call at all. I am not sure if she no longer remembers how, or just doesn’t think about reaching out now. She is more reactive than anything, I think. It is horribly sad and frightening to think that it could happen to us, isn’t it? I just wish you the strength to make the decisions (such as moving your parents closer) and take the actions to protect your health and sanity through this. hugs.

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  15. Thank you Mandi for your honesty. I have Early Onset Alzheimers Disease and am involved with many people like myself all over the world who fight to bring awareness to this hideous disease. We advocate absolute brutal truth and honesty when talking about our dementias that way the word can learn more about the disease.
    Your writing is so sad but beautiful that I felt every moment reading it. Do you have any support for yourself?
    http://www.alz.org – Alzheimer’s Organisation is a good site.
    The people I am involved with is http://www.dementiamentors.com which is for people with dementia created by those with dementia, there are some good videos on there by us that give an insight into having this terrible disease.

    I wish you and your family peace and applaud your loving patience with your mother.
    Gill

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    • Gill, to answer your questions, no, I do not have any support for myself, nor does my father. I think it’s particularly important for him to get some support because he is just so confused and doesn’t quite know how to handle it. I appreciate your offering me some places to seek this, and I plan to both use them for myself and the rest of my family, particularly my dad.

      My mom is in such a bad state right now that I don’t think she will be compliant with any help, yet when she comes around (and I can only hope she does) I will share this with her as well. It’s time we start getting very honest with her and let her know what is going on. She deserves a voice when it comes to her care.

      Again, I can’t thank you enough for your kind words and the information you offered. I will be checking out your blog in the coming days.

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  16. I hope you do go and see her – it must be hard enough for her to deal with what is happening to her without not seeing her daughter. My mum has dementia, and we have lost all our old family life. I live 200 miles away and I see her every month. tracking back through this blog she wanted you to visit at spring break and was hurt you did not. you have to make the effort even if its hard.

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    • I do go and see her, and I have visited her every time that she’s been through this. I, however, won’t allow my children to see her when she is in this state not just because of her agitation, her pour choice of subject matter, and her language, but because my children know the grandmother who is kind and loving and warm, and I don’t want them to witness anything else. I know if she were in her right state of mind, she would want the same. When she is well though, I always take the kids to see her so that they can continue to have a relationship with her.

      I’m sorry you’re dealing with a mother who has dementia. It is such a frustrating and maddening disease that seems to have very little support in the medical field. I send you the best of wishes.

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  17. Powerful and very well written.
    This pattern is very similar to what a hardcore alcoholic goes through when on a drinking binge. It gradually degenerates into continuous phone calls at all hours to hit back against some imagined slight or another. It can last for days, or as long as the person can stay drunk. The phrase “I know she doesn’t mean it” hits very close to home.
    This is worse though, because it’s not something she has any power to control.
    Finding new and better treatments for this disease really needs to become a priority.
    On a positive note, I’ve poked around a little and like what I read; you have a new follower 🙂

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    • Well, hey. Thanks for the follow. I hope you’re not disappointed. This particular post is a little different from my usual, so I do hope you’ll still come around. I tend to handle pain through humor. I’ll have to check out your blog, too. The title of it is quite intriguing.

      Ironically, my mother was a hard core alcoholic before I was born but hasn’t had a drink in 40 years. I agree with you that we need new and better treatments for this disease. It’s so difficult to watch a loved one go through it and not be able to help her. All we want is for my mother to keep her dignity and to have a good quality of life.

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  18. I have gone through a similar situation with my mother and it is one of the most emotionally draining experiences I endure. I am the only one left who speaks to her, my brothers checked out of her life a long time ago. My father protects her and always goes along with her. But she is my Mom so I can’t walk away.

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    • If my mother doesn’t watch out, she is going to alienate herself from so many people because when she hits her angry stage, she uses her phone and calls everyone in her address book to tell them exactly all of the horrible things she has thought about them and kept to herself all of these years. I, like you, cannot walk away. I’m sorry that you know this feeling. It’s such a baffling and horrible disease.

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  19. I can’t “like” this because it made me cry for you and your family. It is heartbreaking, and you expressed it so eloquently I felt like I was standing there beside you, silently witnessing your pain and struggle and strength. I don’t really know what to say, except this post is amazingly done, and my heart breaks for you, and your Dad.
    Sending support your way-
    C

    Like

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