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Posts Tagged ‘dementia’

Remember that leap your heart made when a friend knocked on your door and asked your mom if you could play?
Please oh please oh please say yes, mom, say yes…
You bolted out that door and ran from all the adults as fast as your Keds would carry you.
Those words, “Come play,” still makes my heart leap.

I’ve decided not to age. Technically, we age from the moment we’re born. Technically, parts of our body peak at 30. But I’m not talking technically. I just don’t identify with this whole aging thing. It’s like death. Who gets death? Technically we die. Our pets, our loved ones, apple trees and hummingbirds, right whales and honeybees. We die. But do we? We fight death literally and metaphorically. Our brains, our hearts don’t know how to reconcile with this concept. It never feels right, does it?

My thought is because we don’t die. We transcend.
Various religions have given names to this basic belief. Eternity. Heaven. Hell. Reincarnation. Even if you say you don’t believe anything about the afterlife. Even if you say we become dirt or stardust which is still a form of transcendence we believe that something of our souls, for lack of a better word, lives on.

With that thought I whip back around to the title. If we have such a hard time with death then doesn’t it make sense that aging, just foreplay to death, doesn’t sit well either?

I know, I know. Aging isn’t all bad you say. You are rocking your new shock of white hair. You kind of like stepping out of the sexy game and wearing comfortable clothes and not worrying about the priss and preen that goes with attracting a mate. You love being retired and not feeling the pressure of getting out there every day. You argue that these are the perks of aging that come with the not so great perks of bad knees, high cholesterol and actually contemplating dentures.

Before I sound uncompassionate let me say that I know too well what it’s like to be a caregiver, to grieve, to take a sharp blow so hard that no breath comes, to be so relieved that a year that held so much pain is over even though I don’t even know or care what comes next. Life can be too full of all things shitty. That’s why I’ve decided to live with gusto whenever I can. Not because I’m oblivious to sorrow but because I am acutely aware.

Now that I’ve posted my disclaimer let’s get back to the fun stuff.
So instead of aging this is what I plan on doing for the next, oh, 30-50 years:

Play.
Be downright silly.
Laugh until I snort.
Goof off and waste loads of time navel gazing or the equivalent.
Nap.
Flirt.
Create.
Lighten my load–physically and emotionally grow lighter.

How?
By playing first of all.
By choosing to strip my backpack of hurts I’ve been nursing like sucking like crazy to get one more drop out of a dried up teat. By saying lots of nos and no thank yous–not for me, by saying big, crazy risk-taking yeses, by not doing a damn thing I don’t want to do and realizing it’s damn near impossible to do anything I don’t want to do. That means owning some scary shit. Then laughing at my own hand-made messes.

By standing in my own life and getting out of everyone else’s. Boy is this one tough. It’s a lot like hide-and-seek and running back to home base again and again.

By not taking myself, my darkness, my ugliness, my blinding ambitions, my tail-chasing avoidance laden quests, too serious.

Serious is too f*ing serious. (I love to curse folks, so I just might have to let loose and be my true self a little more often.

I just don’t give a shit about all the rest.
Arguing exhausts me.
I don’t give a rip about religion or politics or whatever else folks post on the almighty Facebook just to get a rouse out of everybody else. Vote. Sign a petition. Serve soup at a shelter. DO something with those beliefs and respect everyone else’s rights to think for themselves.

I’m going to have to feel my way through this growing younger thing.
Today, I’m going to doodle.
Swing so high my feet go over the lake behind my house.
Pull weeds.
Go to the beach and the pool with my granddaughter.
Make love to my husband (check on that one–accomplished that by 7am!….sorry if that’s a TMI but let’s get real!)
Eat watermelon.
Do some damn good writing (which I hope I am accomplishing right now.
Nap. It’s summertime people. Naps are mandatory.
Make up stories about fairies.
Eat food grown in dirt. If I’m going to eventually get back to motha-earth I might as well eat the rainbow and swallow a few dirt-crumbs along the way.
Then I’m going to the gym tonight and kill it on some weights. Sweat like crazy. Listen to some Kanye–nothing like gritty music to get you pumped.
Then I’m going to play with glow in the dark bubbles as the stars come out and at last fall into my hubby’s arms.

Good life.
Today is a play day.
I hope (and plan) to play my way through this life.
I will be the silly, goofy, crazy hat dancing in the streets 90 year old–and every day until I get there.

I have one question for you…Wanna play?

Wanna play?

Wanna play?

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YES!

Sleep and laughter are perhaps the most healing gifts the good Lord gave us–and it’s the first to go when caregiver stress mounts an assault on your life. You have to fight to protect these two gifts. You have to buy a lock for your bedroom door, take out the TV, turn off your cell phone and not take it into the bedroom with you, refuse to fall for the drama and schemes that your loved ones pull to get you out of bed. It’s not going to be easy….they’re tricksy!

My mother treated the night like we were at the Indy 500. The later it got, the more riled up she got! She’d turn on the lights, bang the cabinet doors, call my name and knock on the door. I had to show her that I wasn’t going to cater to her 24/7. I wish I could tell you that this worked. My mom had Alzheimer’s and sundowners and over time, I had no choice but to get up and deal with the chaos. I had to practically strip her room bare (she seemed to gain super-human strength in the middle of the night and could overturn her nightstand, rip all of her clothes off of hangers and empty her drawers into a pile in the middle of the floor).

If you’re reading this and your loved one isn’t doing these things (yet) this probably scares you. All I can say is that Alzheimer’s takes you and your loved one to some pretty bizarre places. You’ll experience things you never even thought of! And yes, at times, it’s scary.

But at some point you stop being scared. They’re still your mama, your daddy. And caregiving makes you brave. It toughens you up. You face your monsters and you realize that you either stand up and take control or realize you’ll be bullied from here on out. So you deal. You get strong. You love and you hold your temper even when provoked and even when you don’t get any kindness back. You make tough decisions. You do what’s best.

And you laugh. You laugh so you won’t cry. You laugh and cry all in the same breath. You realize that life is precious, and sweetness still abounds, and that the crazy stuff might just be the good stuff. You laugh because none of it makes sense. You laugh so you can let go, so you can feel, so you can hope again.

So right now, look up a joke, or call the funniest person you know and tell them you need cheering up. Vent, share your crazy-awful, silly, you-would-never-believe-what-mama/daddy/husband/partner just said or did….You laugh because it’s the only antidote to grief or sorrow there is.

Laughter and sleep–ain’t nothin’ better…

Take both–or either–any way and any time you can get them.

~Carol O’Dell

Author, Mothering Mother, available on Amazon 

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Mike Wallace died April 7, 2012. His last few years were spent in the confusing and tangled maze of dementia. He was 93 and  was a newscaster most known for anchoring 60 Minutes and in the media for over six decades. He’s a prime example that if you live long enough, you just might get dementia or Alzheimer’s (Alzheimer’s is a type of dementia). Your odds increase exponentially with age. According to the Alzheimer’s Association your chances of developing Alzheimer’s doubles about every five years after age 65. After age 85, the risk reaches nearly 50 percent.

So our first challenge is to survive (or hopefully skip over) heart disease and cancer.

The major causes of death (in order) are: heart disease, cancer–both of these way out in the lead–lower respiratory infections, stroke, accidents, Alzheimer’s diabetes, flu and pneumonia, and self-harm (suicide).

As scary as Alzheimer’s is, heart disease and cancer take far more lives.

But Mike struggled with other demons–several years ago he shared that he struggled with depression and even attempted suicide. His honesty helped to shed light on depression, something millions face in silent shame. His life, like most of us, was a mixture of great highs and devastating lows. He was by all means a success, but he also lived through the death of his son (he had a falling accident in Greece when he was just 19), divorce and death of his wife, and several physical and mental challenges.

He was known as a fierce interviewer and was often referred to as an interrogator. He interviewed many of the world’s top and toughest leaders–and he never flinched.

I heard one of his colleagues say that he recently visited Mike and that he didn’t remember anything about 60 Minutes or what he had achieved as a broadcaster. In some ways, that’s sad, but I take it as a cautionary tale. Appreciate life now. Honor your journey. Celebrate it now. None of knows what tomorrow brings. While that sounds ominous, I don’t mean it to be, just that there aren’t any guarantees.

Life is today. What will you remember of your life? Who knows. The point is what you’re doing right now. Live it. Celebrate it.

Mike, tonight we celebrate you.

~Carol O’Dell

Author of Mothering Mother, available of Amazon 

Carol D. O’Dell’s Mothering Mother is a frank, unflinching true story of a daughter coping with the role reversal when her sick and aging mother moves in. Carol holds back nothing, offering up hilarious moments alongside the poingnant and the heartbreaking.
More than a memoir, Mothering Mother will inspire, entertain and hearten anyone facing the challenges of caregiving. Through it all she must find the time to escape and nurture her own body and soul while caring for her children, her mother, and her marriage.
Written with wit and sensitivity, Mothering Mother will help others survive–and thrive family life, including the caregiving experience. Mothering Mother was originally written from Carol’s daily journals and captures the reality of everything from driving issues, jealousy, doctor and medical care concerns,, hospice, grief, family dynamics and the joys and challenges found along the way. Mothering Mother is perfect for the sandwich generation, multi-generational households, and for those who care for loved ones and want to face each day with purpose, joy, and hope.

Resources:

http://www.cbsnews.com/8334-504803_162-57411009-10391709/a-look-back-at-some-memorable-mike-wallace-reports/?tag=cbsnewsMainColumnArea.1

http://www.google.com/hostednews/ap/article/ALeqM5jadeEUfpe-0vNVtCIM-ETbcl9o-w?docId=123741572d8e44cbb208611f8e3c6e06

http://www.alz.org/alzheimers_disease_causes_risk_factors.asp

http://www.cdc.gov/nchs/fastats/lcod.htm

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Last week I was asked as a Caring.com senior expert to speak on NBC Miami Live show and talk to folks in South Florida about how to choose a senior care facility for your aging loved one. Sometimes no matter how much we want to keep our loved one in their own home, or with us, it’s jut not possible. Working caregivers, frequent falls, severe dementia or other round the clock care needs can make it impossible for your loved one to remain with family. If, or when that time comes, it helps to have a plan and to already know your area and what it has to offer for families.

Here is a link to Caring.com’s YouTube channel to view the NBC Miami Live interview:

http://www.youtube.com/user/caringcom#p/u/0/u_8LHy-Cjto

It’s such a big decision and you want to make sure your loved one adjusts and is safe and well cared for. Are there specific points to help guide you through the search? It’s so overwhelming I thought I’d just bring up three key points to help guide you.

3 Tips to Consider When Searching for a Senior Care Facility:

  • Look past the fancy “storefront” and notice how folks are being treated. More and more facilities are beginning to look like country clubs, and that’s great but real care is what you’re after. Look past the golf carts that whiz you in and out, look past the luscious garden-like entrance, past the swanky lobby and even ask to see something other than the staged guest room all decked out with new pictures on the wall and a great view of the courtyard. Ask to have lunch with the residents. Stroll to the community center or gathering room. See if you can go down the hall where your loved one might be placed and see who their neighbors will be.
  • Don’t just take the tour–branch off–ask the residents (and their family members) who live there. Ask the residents if they like the food, if they get their medications on time. Ask their family members if they’ve ever had a bed sore or have problems with any of the staff or other residents. Even if they say the right words, notice how they hesitate, get antsy, or look around as if they’ll be heard. If your loved one has dementia ask to see that ward. Make sure there are safety measures for them not wandering away, and also make sure they are spoken to in a firm but kind manner. Look in their faces and see if they have that hazy drug look. Notice if they’re dressed, if their rooms are tidy, and if there’s a smell of urine in the air.
  • Ask how concerns will be handled, and what you can do if you need to change care facilities. Face it, you’re going to have certain questions and concerns. You’re going to have to ask them if they’ll change something to accommodate your loved one’s needs–that’s just normal adjustments. Find out how that’s handled up front. Talk to not only the day staff, but the night and weekend staff. Ask how they do their background checks and if they’re updated. Ask how you handle serious issues and what happens if you choose to move your loved one to a different facility.

Don’t think that once you move them in that your job as a caregiver is over. It’s not. You’re their care advocate. Visit often and not at the same time. Be cordial with the staff, get to know them and genuinely care about them. Bring in a treat or send them a thank you card if they’ve done something thoughtful or helpful. People respond to positive reenforcement and caring for a (sometimes) cantankerous, sick person who isn’t always jolly is more than a job, it’s a calling. It’s to your benefit to reach out. People who are visited often receive better care, and besides, it’s just the right thing to do.

There’s so much more I could talk about, but this is enough for now. In the end, follow your gut instinct. Stay involved and do all you can to surround your aging loved one with good care–no matter where that might be.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

Got a caregiving question: Send it to me, Carol O’Dell, Caring.com’s Family Advisor at Carol@caring.com

(NBC Miami Live interview is now on Caring.com’s YouTube channel (click on link below):

http://www.youtube.com/user/caringcom#p/u/0/u_8LHy-Cjto

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Caregiving my mom carried many ironic gifts. One is that I witness how love goes on–after death. My parent’s marriage lasted for 52 years. They faced the Great Depression, World War II (Daddy served for four years–in France, at the Battle of the Bulge, and then stayed to help rebuild the country), a miscarriage, an inability to have natural children, a two career household when that was quite unusual, and later–one illness after another, including daddy’s final battle with heart disease. What I realize now, looking back on this vast relationship landscape, was that love goes on. As a daughter and caregiver, I am profoundly grateful to have witnessed this.

My mother was a widow for 18 years. She would have never wanted that. She had no desire to marry again. Daddy was the love of her life–and vice versa. I was adopted when they were 54 and 58 years old. Established. They argued (petty but quite verbal) all the time.Both of them retired by the time I was in second grade, so they spent a lot of time together and with me.  They only have maybe two tiffs that seemed rather big the whole time I knew them. They were as polar opposite as can be. He was quiet, a bit melancholy. Deep. Thoughtful. She was loud, vivacious, and her moods were shall we say…unpredictable. And yet, they worked it out.

More than that, they adored each other. They complimented each other constantly.  They respected each other, bragged about each other, doted on each other. And yet, they were completely normal. She talked too much and that drove Daddy nuts. She micro managed his entire life down to picking out his daily underwear. Daddy was slow. Wouldn’t do anything he didn’t want to do. Stoic. Refused to follow the doctor’s orders. That infuriated my pull-pushing, dot every i, OCD mother. He escaped each day down to his chateau–the garage he built with his own hands. That’s what marriage is like.

Daddy did all he could to look out for my mother. He left her a home, a generous savings, health and life insurance. More than that, (which all of that became less valuable over time–almost 20 years has a way of gobbling up money and goods) he left us all a legacy.

I’m grateful that my mother, who fought Parkinson’s and at the end, Alzheimer’s/dementia didn’t forget her husband–not until maybe the last year. We talked of him every day. We kept his pictures out. We shared stories. And as you can probably tell, I adored him, too. With all of my being.

And now, both my parents are gone. Time has taken them. That’s what time does. And yet, they remain. Their marriage endures. They are my example. I am profoundly blessed to have been adopted by such a union–and I say this in full light of my less than idyllic childhood (I did mention that my mother was unpredictable and for anyone who has read Mothering Mother, they’ll also note that she wasn’t exactly easy to care for either!)

Still, love is what endures. Spending the last years with my mother and caregiving for her daily needs gave me the opportunity to witness love in action. Their marriage carried over, like the scent of gardenia on a southern night. The sweetness remains.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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A friend of mine told me that she confronted her mom about her memory loss and told her she was concerned it might be dementia or Alzheimer’s. Like many caregivers her hope was that she could convince her mom to visit a neurologist. Instead, her mom got furious and now won’t talk to her. My friend is devastated. She wonders if she stepped over the line, if she should have just made up another excuse to get her to the doctor, or if she should have just let it go. Now, there’s nothing but silence.

Being shut out of a loved one’s life really hurts. You question everything you said or did. You feel rejected when all you wanted to do was to help. What do you do now?

There’s no one right answer. Every family is different.

Suggestions for getting past the hurt: 

  • Give it some time–many people come around after their hurt and anger has subsided.
  • After a cooling off period, act like nothing has happened.
  • Try reasoning with them and assure them that avoiding the matter only makes it worse–and it might be a medication interaction or something else, but it’s best to know and be proactive.
  • Pull the “big guns” and insist the two of you go to the doctor–some people respond to a firm hand.
  • Try a bribe–is there something they’ve been wanting to do? For you to take them to see their sister, or take them to play the slots? Use whatever helps them safe face.
  • Send gifts and cards and lure them back. Be the bigger one and realize that you’re their lifeline and they need you right now–and if they want to “feel”  or “look” in charge, then let them.
  • Get someone else who’s on their good side to take them. They may not want to give into you, but they may go with their sister or best friend.
  • Leapfrog over a diagnosis and start dealing with the day-to-day concerns and issues you can do something about.

***

In the meantime, keep a journal. Make a note of any excuse, lie, avoidance, any times of confusion or bizarre findings such as the keys in the freezer, when they got lost coming home from the corner bank, or when they mentioned visiting a long deceased relative. As a caregiver you need to know what you’re dealing with and how often it’s happening.

Realize that a diagnosis isn’t going to do much–not in practical ways.

There’s no cure for dementia or Alzheimer’s and that the meds only work during the early phases of the disease and the medications only work on about half the people taking it, only slows the progression of the disease and typically only helps for about a year. But if your loved one is experiencing paranoia, anger issues, or anxiety, then ask about medications that can help these very real and very frustrating conditions.

If you suspect your loved one has memory loss then they probably do. so start working on practical aides (notes around the house, home monitoring, safety precautions such as a medical alert bracelet, and home help or live-in assistance, just to name a few).

Alzheimer’s and dementia certainly has its challenges, especially emotional ones. As the caregiver you have to be the bigger person. You have to do what’s right and not think about your feelings. Step over the hurt and find a way to reconnect.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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Some people are shocked by my candidness in my book, Mothering Mother–about my resentment, my anger, my fears about caregiving. I wrote my book in “real time,” as I was caregiving, so the exhaustion, the confusion, the rabid fear are all there–blemished and flawed. Even though my story is at times, scary, I would have given anything for such a guide–for someone to tell me the truth about caregiving–however gritty it might be. 

My mother had Parkinson’s for years. We had grown accustomed to the medications, the schedule, the times or days when nothing worked–and while it was challenging, we had no idea what was to come. My mother also had some heart disease. She had had a mild heart attack and was taking medication, but it was nothing like my dad’s heart condition–he struggled for every breath. But the coup de grâce was when she started showing signs of dementia/Alzheimer’s. It was like juggling five plates in the air while tap dancing on an open fire. Alzheimer’s tested my mother, me, my family, and all of our relationships in every way possible.

So I thought I’d recap a few truths I learned about caregiving along the way.

  1. Caregiving will uncover every fear and flaw you have. This isn’t to destroy you, but it is an opportunity to learn about yourself.
  2. Do what’s in your heart. Don’t care-give because you think you should do it because you love someone, and do it in the way that’s best for you–part-time, full-time, in your home, in theirs, placing them in a care facility–it’s nobody’s business–you’re the one giving the care and it’s between you and your loved one.
  3. At times, you will over-extend yourself–BIG TIME. You will be sleep deprived, perhaps abuse some substance–food, alcohol, sleep meds–just to get by. You will at times, ignore your health, ignore your other relationships, and take yourself to the bitter edge. It’s just part of the process. Sometimes, there’s no one else to help you, and you go and do and push past what’s sane or smart. Just try not to stay there.
  4. You will be really ugly. You will curse, get violent (hopefully with a pillow). snap and yell…and you’ll feel really bad.
  5. You’ll want to quit, give up, and run away. It probably won’t happen on a bad day, or a day you lose your temper. It will just come over you. A calm, “I’m done,” feeling. Sometimes it happens because you’re so bone-tired you can’t see straight, and for others, it’s because you’ve done all you can and something in you knows you need to stop.
  6. You probably won’t get to quit caregiving when you want to or need to. Exits usually have to be planned. Your love and commitment will keep you from just driving off. Fantasize about it all you want–it’s a great stress reliever, but when it’s time for a change, make a plan that’s good for everyone.
  7. Alzheimer’s in particular taught me to dig deep inside myself and decide what kind of daughter (and person)  I was going to be. Was I going to be mean just because my mother was mean to me? Was I going to let go of all the petty hurts that had built up over the years? Was I going to be able to hold true, love deep, and stay committed to my mother’s care even if her mind completely unhinged? These were the challenges I faced every day–the ethics of the heart that I had to ask myself again and again.
  8. There are things you’ll never tell anyone. Both tender, private moments–and times when you really lost it, or didn’t do what you know you should have done. Eventually, you have to accept all aspects of caregiving. You’ll have to incorporate all of you–forgive yourself for things you’d never want to admit, and even praise yourself for the few times you really stepped up to the plate. Most people have a harder time accepting the good in them–than admitting to their dark side. Sad, to think that we can hate ourselves easier than love ourselves.
  9. Death is really scary, but you can do it. If you’re one of those people who haven’t been around a lot of people dying in your family, then all this is going to seem really foreign. Death and dying are like a lot of things-it’s more scary in concept than in reality. When it’s your mom, dad, brother, sister, spouse, it’s in some ways cathartic. It’s finishing something. It’s biological and quiet. Part of it can be a grueling pressure, and if the dying process lasts for days or weeks, it’s really, really hard–but by then you’ll need to stay and see it through. You’ll be glad you did it. There’s something about closure that’s really, really important. Don’t miss this part of your journey. There’s much to learn. It’s also healing, whole, and part of what it means to be here on earth.  

I now look back at my caregiving years with a sense of reconciliation. It didn’t happen all at once. The first year after my mom had died, I felt that I killed her–that I had let her down. I couldn’t keep her alive. I had to accept me, her,  her–Alzheimer’s and all.

How else will we learn if we don’t accept the opportunities and circumstances that come our way?

~Carol O’Dell

Author, Mothering Mother

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