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Archive for the ‘violence’ Category

Is your parent or spouse  out of control?

It can feel that way, if you’re dealing with Alzheimer’s.

Some days, my mom was worse than a room full of toddlers. She would try to “catch a taxi” by sneaking out the front door, stand with the refrigerator door eating jelly with her hands, grab my wrist and beg “Little girl, take me with you,” when I needed to leave her room, and sometimes yell or dump everything out of a drawer. Sometimes she was whiney, other times demanding, and yes, there were day when she was downright mean.

I knew it was the Alzheimer’s, and I did all I could to keep her safe and watch her carefully, but it was near impossible. At this stage of Alzheimer’s (mid to late), the medications don’t work as well.

This is the point when many families start seeking a care home for their loved one. I understand why. It’s not safe, and caregivers have to consider their own health, their livelihoods, and their relationships and balance all of this on the head of a pin. The guilt, worry, and resentment pile up like too many Autumn leaves.

Keys to Dealing with Difficult Alzheimer’s Behavior”:

  • As hard as it is, separate your emotions. Your loved one isn’t meaning to get you upset. Alzheimer’s causes changes in the brain. They can’t remember or comprehend what you’re asking them to do or not do. No matter how mad you get, how much you yell, it won’t stop them. They might not even understand what you want of them when you’re saying it, and certainly not minutes, hours, or days later. Love your mom, dad, spouse just as they are–and hold in your heart who they’ve always been to you.
  • Get home help. Now is the time you’ve been waiting for. Your loved one needs close supervision–more than one person can give. Hiring a home health aide is still a cheap(er) alternative to a care facility. Check into agencies who are used to working with those who have Alzheimer’s and ask specifically for a more experienced professional.
  • Distract and substitute. I wrote a blog at AlzheimersCaregiving.com on how these two techniques can help to calm an agitated loved one. You can’t argue with them, but you can distract them–with another object, a person, a song, or substitute their behavior or object with something “shiny” that interests them. Keep a “toy box” of items they like–a stuffed animal or old pocket watch that doesn’t work.
  • Start checking out some nearby care homes. As much as we love them, want them home with us, sometimes it’s just not possible.  locked facility (sounds terrible but it’s not) can give you the peace of mind to know they’re not going to wander. You’re still their family, their care advocate, but know that many families feel they have no alternative –for safety and health reasons than to place their loved one in the best care home (locked/long-term care/memory disorder centers) where their needs will be met.  

All you can do is face each day as it comes. Rally help around you, use every tactic you can, separate the disease from the person, and know that you might not be able to keep  loved one at home for the rest of their lives, but your love, committment, and caregiving advocacy is much needed.

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Alzheimer’s is one insideous octopus of a disease. It does one thing to one person and something totally different to another.

Some individuals become docile, too docile. They stop talking, and pretty much stop moving. For others, Alzheimer’s turns them into a fidget machine. They pace incessantly, talk, babble, rant, need next to no sleep, and when forced to sit, their knee jiggles non-stop. Others are paranoid and will lash out at anyone who tries to touch them–it’s as if their brain–and body–is on fire.

And for some, Alzheimer’s makes them anxious, mean, and violent. There’s no other way to  put it.

They curse when before the disease they were  practically saints. They use vile language that would shock and embarrass a sailor, and their eyes look as if they could kill you in your sleep. For many, their violence is more of a protective mechanism.  They may thrash, hit, try to bite if they feel cornered, yell, cry. It’s more exhausting and embarrassing than harmful. They act like really big two year old.

In all of these cases, Alzeimer’s effects each brain differently. You  have to think of it as a chemical reaction, not a persoanl decision.

And then,there are the truly violent . Their rage is unpredictable and unprovoked. They slap, bite, kick, pinch, and for a few, and surprisingly, they possess the power to break bones, knock someone down, and are truly dangerous.Many are placed in care facilities because their families can’t handle it. Their families don’t visit as often because they’re scared. They feel as if their loved one is dead to them, and yet they struggle with guilt every single day. It’s an awful existance for everyone involved.

It’s that interum time that I’m addressing–when you’re starting to notice some anger–gritting teeth, cursing, grabbing your wrist really hard, knowing you against the wall–and you don’t know how far this will go. You make excuses. You provoked it. You shouldn’t have confronted them. They’re not taking their meds. It only happened once…these are just a few excuses we create to “protect” our loved one.

I urge you to speak to your doctor now.

For some, an added medication that stabalizes their mood (and yes, it may make them lethargic) can curtail their violence. It doesn’t work with everyone, but if you catch it early, it just might work.

For many, particularly spouses, you hide these changes in behavior  from your children, your neighbors, your friends.

You stop having people over. You wear long sleeves to cover bruises.

You’re afraid all the time. More afraid they’ll take your husband or wife away than that you’ll be hurt.

You can handle that–but the guilt, the shame, the thought of being separated is what keeps you silent.

You grieve the death of your marriage, of the life you had–and yet, you can tell no one what you’re going through.

You don’t want anyone to “see” your husband, your wife this way. You want to preserve their dignity.

I understand. I did this with (or for)  my mom. I shielded her from the world. I didn’t let people know how chaotic, out of control, scary and heartbreaking it really was. I let her dig her fingernails into my arm and scream at me, her eyes so wild I didn’t even recognize my mother any more. If I would do this for my mother, I can truly understand how a husband or wife would be wiling to do even more.

But here’s what I came to realize:

This is a disease. No one will judge you or your spouse–and if they do it’s because they don’t understand what’s happening. 

Your loved one can not  help this. This isn’t their “inner self” or what they’ve been thinking all along. You didn’t contribute to this either. It just is.

It really is nobody’s business and you don’t have to share it with everyone, but having at least one confidence, one dear friend or your clergy can help lighten your heart.

You know those statistics about caregiver stress and how many caregivers die before their loved one? They’re talking about you!

You’ fall into that category big time. All this stress could lead to depression, heart disease, obesity, and strokes–and you know your loved one wouldn’t want this for you.

You are not alone.

According to a recent study conducted by the Journal of the American Medical Association s of resident-to-resident violence in Massachusetts nursing homes and dementia special-care units, researchers found that about 25 percent of the dementia population in a care facility had violent tendencies. More and more law suits are cropping up because staff and patients are being attacked, and resulting in physical injuries such as fractures, dislocations, and lacerations.

Sometimes, you just can’t do it anymore. You feel that you’re in a living hell.

This is a truly dangerous state and you have to ask for help.

With guidance, you can find a good care facility that has a low patient to care staff ratio and administers the proper medications needed to lessen the violent outbursts. I know you don’t want to “dope” your loved one. But you can’t continue to be hurt, or risk that for others.

This disease can get really ugly, and if you’re in this situation, I am so, so sorry–but please, don’t suffer alone.

That’s not love, and your loved one wouldn’t want this for you.

Screw what your family would think, what they neighbors will think. Protect yourself and know that asking for help is the right thing to do.

I can’t promise you that you and your spouse can stay together–in the house. I can’t promise you that this is going to all magically get better.

Sometimes we really do have to grieve and let go–knowing that you’ll never get back what you had.

But I promise that while it’s going to be hard–and lonely—and you’ll probably feel guilty–after a time, things will get better.

Your loved one’s care might be better managed with help. And although your life won’t be the same, it can be good. A new good. A different good.

If you’re experiencing Alzheimer’s, Lewy Body or dementia related behavioral changes (violence or otherwise), please consider calling the Alzheimer’s Association National Hot line. It’s confidential and you can speak to someone who really cares. The number is: tel: 1.800.272.3900

~Carol O’Dell, author of Mothering Mother

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Caregiving isn’t always sweet and sentimental. Caregiver relationships are as complicated as everybody else’s. What happens if you need to/are asked to care give someone who has hurt you deeply?

I met a woman at a book club once and her face revealed her suffering. She shared that her husband had late stage Parkinson’s and she was basically housebound and caring for him 24/7. She looked beyond exhausted.

She also shared that she probably should have left him years ago.

Sometimes we stay. For the kids. For the security. Because we were too chicken to leave. Now it’s too late. We need to finish what we started.

I understand. I’ve lived long enough and have been married long enough to understand how very complicated things get.

My “book club” lady shared she really didn’t love him any more. He had killed that long ago.

I didn’t ask, but many times relationships are mangled beyond repair.

Repeated infidelity. Addictions. Isolation and control. Verbal or physical abuse.

There are things we never tell anyone.

I’ve volunteered in shelters, counseled couples, and have found that the deepest hurts usually go unsaid.

***

So why do it? Why care give someone who you simply can’t love any more?

Why stay? You may only have a few years left yourself.

Each person has to figure that out for themselves.

Sometimes it’s not that black and white. Yes, there are hurts. And no, you don’t feel anything for that person, but you have your reasons. Maybe it’s in part how you need to see yourself.

So you stay.

How do you love someone who has hurt you?

Don’t try to make yourself love them.

Don’t feel guilty.

Don’t try to look noble.

Do what you can.

Choose a path of integrity.

Caregiving isn’t about the person who is ill, aged or infirmed. It’s about you.

Decide who you want to be, regardless of them.

Mentally and emotionally separate yourself. You’re still giving them good care.

Trust your good heart.

Practicing a faith can bring you deep comfort.

Know that forgiveness can be as basic as wishing them no harm.

Even if they’re still hateful, vindictive and cruel, if you choose to stay then it’s on your terms.

If you can, if you choose to, place them in a care facility. You’re still being responsible. You’re still watching out for them. You don’t have to humiliate yourself and continue to be demeaned. They chose their path. You choose yours.

Find your place of peace.

Detach when you need to. Methodical caregiving can still be good caregiving.

Begin to nurture yourself. Your dreams. Reward yourself for what you’ve chosen to do if you believe it’s the right thing to do.

Duty. Responsibility. Integrity. These are important words our culture has all but forgotten.

Choose a higher path.

~Carol D. O’Dell

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

www.mothering-mother.com

 

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The latest stats released by the Alzheimer’s Association paint a grim picture.

USA Today reported that ten million are expected to get Alzheimer’s over the next 2 decades.

Most boomers I know are a bit stunned. 1 in 8 will get Alzheimer’s.

I started bunching people I know in eights. Terrible, I know.

My husband has 8 siblings. Which one?

I mentally grouped my friends and imagined myself visiting them, trying to rouse the remnants of our relationship.

It was so much easier in my imagination for it to be somebody else other than me!

I felt like those people in the Titanic lifeboats. The boat’s too heavy, who’s going to get the ole’ heave ho! We always kid about poor Leo’s icy fingers being pried off one by one. My husband says he can see me doing that. I tell him I’ll sing him a Celine Delion song and wave to him as he sinks to the bottom of the Atlantic. Just kidding.

I walked around for days living too far into the future, speculating too much about whether or not I’d be the one in eight.

Then, I remembered the quote:

“To tell a man his future is to condemn him to one.”

That’s kind of what this news did. Maybe it didn’t mean to.

I assume their reasons for imparting this knowledge was to spar research, educate the masses, but I wonder if they know what they’ve done?

It doesn’t take long for the rebellious inner child to stand up and yell, “Hell no!” I’m not going without a fight.

I’ve already seen Alzheimer’s up close and personal with my mom. She had Parkinson’s for 15 years and Alzheimer’s for at least the last three years of her life. That’s when I brought her into my home, so I know how brutal it can get. What I’m not willing to face is a two, three, four decade old bully poking at me, taunting me, telling me over and over he’s gonna get me in the end.

Are you worried about getting Alzheimer’s too?

One thing I’ve done is to go ahead and play my own devil’s advocate.

So what if I get it? What will life be like?

Many scenarios here: I could be mean and belligerent. Doesn’t sound half bad, I’m kind of tired of being nice all the time.

If I just had one day where I told people what I really think…

It could be scary. That’s what I don’t want. To be on the edge. Nervous, agitated, restless to no end. Paranoid. Angry beyond consoling. To that, I say, drug me. Drug me in a stupor if you have to. By then, I promise you, I’ll have had a good life, and if it’s too awful for me or for you, then I give you permission to gork me out of my…mind. If the last couple of years are a throw away then so be it. If it’s painful to watch, then don’t.

Go live a big, bold, purpose-filled life. That’s the best way I can think of being honored.

I’ve told this to my husband and my girls and it’s going in the “important drawer.”

If you love me, then do something meaningful with your life–in my honor, if it makes you feel better.

But, if I’m just in la-la land, rambling around in the past, and I’m rather amiable, then let me enjoy it.

Don’t remind me who’s dead or that I’m nearly there myself. I don’t expect you to play along and mess up the delicate balance of reality you’ve scrambled for–just make me comfortable. If I think I’m sixteen, or twenty four, or forty-four, then let me enjoy it.

I learned the hard way with my mom that most people fear Alzheimer’s (both as caregivers and for themselves) because they can’t control it. It scares them, rattles their nerves. Their loved one acting “not like themselves,” angry, sexually explicit, fussy, playing in feces–it unnerves people. Is it really all that bad? My brain went kaflooey. It’s not a reflection of the kind of person I chose to be–we are in fact, what we choose. It’s not a reflection of our relationship or of you. It just happens.

Brains go haywire and you can’t control it any more than you can control your dreams, your nightmares, and all those random blips that you dare never admit or mention to anybody. It’s just random electrical spasms of disconnected thoughts and of all the other thoughts you’ve suppressed. We all have it inside us, don’t kid yourself. We have to eventually make peace with our humanity, and our lack of humanity.

We have to make peace with this base self, animalistic, driven, insatiable self.

This isn’t even the bad part.

Alzheimer’s does a lot more to the body and mind than simply making a person different or moody or playing in their poop. You think that’s your biggest hurdle at the time, it’s not.

The forgetting grows like a fertilized weed and it begins to invade a different part of the brain and a person’s life: recognizing not only those they love but even themselves and what it means to be here, recognizing objects like what to do with a spoon, what to do with the food someone placed in your mouth, or when your body forgets to take its next breath.

 That’s when you wish for your fiesty loved one to return to you–memory intact or not. We have to come to terms with this too, and this is much harder and deeper. This is when chaos collapses in on itself. This is when as a loved one, you get quiet. You stop talking about it all, complaining. You’ve shed so many tears you don’t have any left. 

This is Alzheimer’s.

I kidded with my girls on Easter Sunday. I told them if I have mild dementia or Alzheimer’s, that I want a dress-up box–with a fireman’s hat like I had as a child, and French beret (we always had a dress-up box when they were little) I want a boa, and lots of make up, and a yellow rain slicker and golashes. I want a cat, I’ve always had a kitty. I want paints and crafty things. I want my room filled with Van Goghs. I want to work in a garden. I want to dance. A lot. I want loud music and me in my boa and fireman hat clutching a bouquet of forget-me-nots and a kitty in a windowsill looking thoroughly disgusted with it all.

We laughed. They said they would. Then they argued as to who would get me. They said they all took their turns with Nanny (my mother). I told them if I had known that would do them in, (trust me, I was the primary caregiver, not them), then I’d have let her fend for herself (joke, we’re quite a facetious bunch).

Each of my daughters have their attributes. At my youngest daughter’s house, I’ll be a fashionista–coach purses and Italian scarves. She promised me we’d make tents in the living room out of sheets and blankets.

At my middle daughter’s house, she’ll clean out my ears and under my nails. My clothes will be folded neatly–neater than they’ve ever been folded. We’ll color a lot there, and I’ll finally be on time wherever she takes me.

My oldest daughter will feed me anything I want. She’s a candy-aholic. We’ll stay in our pjs and watch movies, and she will kick butt with doctors, let me tell you.

While all this is “play talk,” it’s a good way for families to start easing into the more serious conversations.

I do this on purpose. To open the doors. To make everything not seem so ominous.

We all have living wills. We kid about what we want, but we also have the serious stuff in writing–about sustaining life, feeding tubes, and issues no person should have to make for another.

Am I worried about getting Alzheimer’s? Sure, but I fight it.

Are you? It’s only natural, but I hope you find your own ways to work through some of the fears.

I hope you turn the light on the bully monster in the closet and let him know you don’t plan on being intimidated for the rest of your life.

As I’ve mentioned in other blogs, I know what to do to prevent it as best I can–but life’s still a crap shoot.

I think I’m better off concentrating on having some big adventures, some wild tales and daring feats.

If I’m going to eventually forget everything, I plan on having a lot to forget.

~Carol D. O’Dell

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

www.mothering-mother.com

www.kunati.com

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Today, I’ll continue my conversation with author, Linda Merlino.

Her book, Belly of the Whale will be released in April and is about a woman who finds that cancer isn’t the worst thing that can happen to a person.

Hudson Catalina finds herself a hostage of a killer, held in a gas station as violence unfolds. She thought cancer would kill her. Then, a bullet. And then, she decided to fight.  

I’d pick this book up with this premise in a heartbeat.

So, what’s it got to do with caregiving? Death and dying? Everything.

It’s just like life to throw one catastrophe at us and then wallop us from the side with another. Only then, after our self-wallowing whining and being knocked around a few times do we find that we get mad, and get up. Psychologists say humans (and most animals) have a fight or flight mechanism. I say we also have a fight or die one too.  

I know if I get pushed down (and I have, many times), I collapse, cry, grow quiet, too quiet, doubt myself, and then….I get mad. I get back up. I’ve seen myself do this in an almost out of body experience (observation–observing that I’m observing) I hate to see me cower. God, I hate that. I hate bullies, but man, do they teach good lessons.

Where I got this from, I don’t know. I’ve always been stubborn—and rebellious.

What’s your default? How can you use your “bad” qualities for the good? I’ve learned I have to, they’re like a good old pack of dogs always laying under my feet and following me wherever I go. Faithful to a fault. I have to put my “bad side” to work–give it something to do. Make it play fetch.

Even before I was adopted, I’ve been told that my grandmother would tell me the opposite thing to do in order to get me to do the thing she wanted. And I was only four!  Now, I try to use it for the good.  

Linda’s character, Hudson, has gone into “the belly of the whale,” the dark night of the soul, the fear of death and suffering…and that got me wondering…

where does the “will to live” come from?  

Some caregivers are passive. They let life happen to them, and then caregivingcame along and “just happened.” But many times, caregiving will cause us to face our own fears and reflect on our own lives.  

Some people with Alzheimer’s, Parkinson’s, or cancer (not to mention ALS, MS, and other debilitating diseases) succumb to the sorrow and seemingly give up. Others fight like hell. Why? Personality? Life events? What causes a person to get to the point to either lay down—or stand up—to life?   So I asked Linda:  

Q: When it comes to life and death, how much do you feel is “will” or just a person’s time to go? A: You can will things to happen.  I believe that; even death.  I believe also, that there is a time and a purpose in all of what life brings to us.  We do not know when we will run out of summers.  In “Belly of the Whale”, Hudson Catalina feels her time to go is imminent.  The beast she’s been running away from since she was fourteen has finally caught up with her and although she appeared to be fighting the fight, at heart, she probably never believed she would win against cancer. People of extraordinary faith, whether it is old time religion or simple spirituality, can defy the odds.  Even if death finds them through illness, accident or tragedy, rather than old age, these faith-driven folk teach us all a lesson.  

Here is an excerpt from “Belly of the Whale”: 

Ruby Desmond to Hudson Catalina “I’m a woman of great faith,” Ruby said. 

“When Charlie passed, I relied on my belief in God to help me through those long days and even longer nights.” “Weren’t you angry?” I asked her. 

“His dying just like your Daddy is like my mother and I dying of breast cancer.” 

First off, child, you are not dead yet; and second, things don’t go according to our plan, no way, no how.” 

Ruby made her point by thrusting her head back into her rocker and pushing off hard on the runners. 

“I’m not unfeeling to your situation, child, but the truth is you have already decided what is going to happen and that’s plain crazy.  God isn’t to blame for these unfortunate times in our lives.” 

“Who is then?” I asked. 

“Just like I said before, I never get the answers I want when I ask.” 

She made a circle with her fingers in the air. 

 “If you’re asking me, which you are, I’ll tell you that life’s a circle and we go around like the spokes on a wheel.  Sometimes we’re happy, our faces in the light, and sometimes the wheel thrusts us into harsh places of darkness and despair.  But we have to believe that it keeps going around, back into the light.  Never give up hope.”   

Q: What was the bud or seed of this story? 

A: The interesting thing is that the seed or bud of this story was not about Hudson Catalina or about breast cancer.  In fact, the very seed of this book was centered on the character, Willy Wu.  The original title of the novel was “Willy Wu”.  At the time that I began putting words to paper I was re-reading some of Joseph Campbell’s works and I was taken once again with his concept of heroes.  Coupled with this and the desire to write a story about a character like Willy, who is challenged physically, mentally and verbally, I wondered how much Willy processed and if he could transcend his stereotyping and be a hero. 

Part II of “Belly of the Whale” begins with: “Heroes are the most unassuming, and the most improbable of individuals.”Through the filter system of publishing Willy became autistic.

 In the early stages I hesitated to tag Willy.  I felt that the community of his peers might be offended by the mention of a more defined diagnosis.  Now that the story is completed I am comfortable with Willy being autistic.  He rises above his handicaps and fulfills my original intention.   

The story evolved and Hudson Catalina became the main character leaving Willy to be a hero in the true sense.  Hudson must face her fears, but Willy is not capable of fear.  He trusts everyone.  He is innocent, he is pure, he knows about heroes. 

More tomorrow. This is just too good to gorge on all at one time. Savor.

~Carol D. O’Dell

author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir,

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