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Archive for the ‘dementia’ Category

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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Let’s face it, most days a caregiver’s positive outlook sags a bit. Monotony, worry, and sleep deprivation doesn’t exactly add up to being “Miss Perky.”  One thing I can say for my mother is that she had a healthy dose of self-esteem, and that has a way of rubbing off on folks, me included. She even had a theme song-“I love me, I love me, I’m wild about myself…”

She sang those lines to me all my life, and she’d always smile at her own cuteness after. I kinda figured she made up those lines, seems like something she’d do, but come to find out–she didn’t. It’s a real song. I can’t quite figure out who wrote it–the internet trail is hard to follow. I think Tiny Tim sang it in the 60s, but the recording I found is from the 40s. That’s probably when my mother heard it–and even after dementia took most of her memories, this little song stayed put.  And even though she eventually forgot how to sing I now carry this tune forward. My children know it well and now I have a whole new generation to sing it to–three granddaughters who will, if I have anything to contribute, have rock solid great self-esteems.

See, my mother had a whole life way before I ever got there. Most children, even adult children forget that. She was 54 when she adopted me. She had grown up, fallen in love, got married, had her first (secretary), second (executive secretary) and third job (minister), and she had survived the  depression, World War II, health scares,and  her mother’s death–all before 1965, when she became my mama.

So, I find out that this little ditty was recorded in 1940 by , and it regales to love of self. Apparently  this isn’t a new concept, but it’s an important one. My mother had lots of faults (don’t we all?) but being negative, depressed, or ever being called shy or quiet wouldn’t make her list. She was tall and loud, opinionated, and funny. Thank goodness for funny, because funny kept me from losing it on her more than once!

So if you’re caregiving a bigger than life character, sit back and enjoy this song–and if you just need a pick-me-up and good dose of self-love, you’re in for treat.

“I LOVE ME”

http://www.youtube.com/watch?v=5DsSQFVRrTc

I’ve posted the words, which are beyond adorable. It’ll perk up what sags:)

When people write their songs of love they write of one another
It’s always sis, or ma, or pa, or sweetheart, wife, or brother
But love songs that they’ve aimed at me have all gone on the shelf
I don’t think that it’s fair, so now I’ll write one for myself.

I love me, I love me, I love myself to death
I love me, I love me, till I’m all out of breath
I stop at every slot machine that I should chance to pass
And give myself a hug and squeeze as I look in the glass!
Oh, I love me, I love me, I’m wild about sweet me
I love me, only me, so I’m content you see,
I like myself with such delight
I take me right straight home each night
And sleep with me till broad day light
I’m wild about myself.
I love me, I love me, my birthday’s once a year
I love me, Only me, and when my birthday’s near
I go with me and buy myself some gifts to put away
Then I surprise myself with them when I wakes up that day!
I love me, I love me, I’ll marry me some day
Right away, Saturday, I’ll give me all my pay
With me I like to make a date
To meet myself at half-past eight
If I’m not there I never wait
I’m wild about myself.

I know a girl who has the boys proposing by the dozen
Among her lists are rich and poor and even one lone cousin
But when she speaks of love to me I treat her with disdain
I loudly shout, “There’s someone else!”
And then this wild refrain:

Oh I love me, I love me, and every place I go
I love me, I love me, and at the movie show
I take myself right by the arm and push me through the crowd
And listen to myself repeat the titles right out loud.
I love me, I love me, I love to squeeze my hand
I love me, I love me, It always feels so grand
With me I get right in my tub
I let myself give me a rub
Oh how I love to feel me scrub
I’m wild about myself.

I love me, I love me, I’m wild about myself
I love me, I love me, my picture’s on my shelf.
You may not think I look so good, but me thinks I’m divine
It’s grand when I look in my eyes and know I’m mine, all mine!
I love me, I love me, and my love doesn’t bore
Day by day in every way I love me more and more.
I take me to a quiet place
I put my arm around my waist…
If me gets fresh I slap my face!
I’m wild about myself.

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Caregivers need to talk to other caregivers because no one else can truly understand what they face day in and day out. I recently spoke to a group of caregivers at Christ Episcopal University and every one of them needed to be there–for different reasons. Some needed to vent. Others had questions about Alzheimer’s behavior, about forgiving the past, about grief. Some just needed to be in a safe place where they felt accepted, understood, and didn’t have to hide just had  crazy/bad/bleak/or weird their lives had become. No one but another caregiver knows about caregiver stress and how it can build and build. Not their doctor, their less involved siblings, not even their pastor or their therapist–unless they happen to be caregiving, too.

Sadly, our friendships oftentimes suffer in our caregiving years. We’re not exactly great company–sleep deprived, fussy (I was, I can’t speak for you), and a little self-absorbed (in other words, we need to do a lot of venting). It’s important to preserve those long-term friendships and one of the best ways to do that is by not exploding/emoting all over non-caregivers–at least not at volcanic/molten lava proportions. Other caregivers will get when you’re having a “crap day,” I used to call them, and be more patient and relating to your tears, screams and whines.

It’s easier now than ever for caregivers to connect. In the past five years there’s been a boom of care related online forums. What’s great about these is that they’re 24/7.  Caregivers need that. Not only are they up at the most ungodly of hours, that’s usually when they’re the most ticked off, stressed out, and pushed beyond all human endurance. That’s when they need the anonymity and immediacy a forum provides.

Today, I’ll be sharing with caregivers over at Caring.com. I’ve written their Family Advisor column for years and now I am a contributing editor to their home-care newsletters. We’ll be talking about caring for our parents, and since it’s close to Mother’s Day, I’m sure the conversations will gravitate toward our mothers, their care, and our complex and so important relationships with them.

Feel free to join us if you are happening to read this:

It runs May 11th, 2012 from 1-3 Pacific Time under the Caring for a Parent forum, and will also be on Facebook:

http://www.facebook.com/events/342572865796240/

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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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Being a home caregiver can get a bit claustrophobic. I cared for my mom in our home (she had Parkinson’s, heart disease and Alzheimer’s) the last two-plus years of her life. We had some home health aides but most of it was on me–24/7. I didn’t have the luxury of picking up my keys and purse and walking out of the house any time I felt like it, or even when I needed to. I grew jealous of my husband who got to leave for work and my kids who took off for school, dates, or part-time jobs. Jealousy is a nasty habit.

I used to sarcastically gripe that I was doing time in Sing-Sing and planning a prison escape (the humor aspect gave me some relief but it also allowed me to hear myself out loud). Some days everything in me wanted to run–and yet I had chosen to care for my mom. Why was this so horrible? She needed me and I was the only one.

Her insurance had said that Alzheimer’s didn’t require “skilled nursing care,” therefore didn’t cover it. I cried that day. I felt I had no way out. I didn’t want to take my mom to just any home and leave her there–I had to know she was cared for, and it seemed like I was the only one. What got to me was my lack of choice–which started with me.

And then I saw this beautiful photograph of a cloister. I’m not Catholic, but I’ve long admired a monk’s or nun’s dedication to live in a serene, dedicated environment. Cloisters are peaceful, safe, a haven in the midst of a chaotic world. It’s not that a monk or nun can’t leave–but most stay–the ones who chose this life of their own accord.

That’s when I decided to stop thinking of my life as serving a prison term. I have a good home, a lush yard, and I’m doing something I believe in. I looked around–at the books, the unfinished art projects, the exercise ball and treadmill, the stocked pantry–this isn’t a shabby place to be!

Just that shift re-centered me. I pulled books off the shelf I’ve owned for years but hadn’t got to read. I pulled out a painting I hadn’t finished and started following a couple of Food Channel chefs and gaining some culinary skills. I got out the binoculars and mom and I started watching a pair of cardinals raise their babies in a nearby nest (I’d have to hold the binoculars for her, but she caught a few glimpses).

This one shift–from prison to cloister–gave me a small measure of peace and a grateful heart (but I still snuck a spoon from the kitchen utensil drawer–in case I need to dig a tunnel).

~Carol O’Dell

Author of Mothering Mother, available on Kindle

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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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It’s not that most caregiving families want to, but there may come a time when your spouse’s or elder-parent’s care becomes more than you can physically or emotionally manage at home. Caregivers need to look past the initial bells and whistles of a care facility to make sure that your loved one is receiving the very best care at all hours of the day and night.

How to Choose a Care  Facility For a Loved One:

  • Plan early—don’t wait until it’s an emergency. The highest rated
    care homes usually have a waiting list.
  • Don’t pay for more than you need. Know that cost rises with care needs, so don’t pay for services your loved one doesn’t need–yet. Ask if they have a graduated care situation or whether your loved one will have to find another home if their care needs increase.
  • Consider smaller care facilities or even a group home. Bigger isn’t always better.
  • Don’t get razzle-dazzled by fancy entrances/amenities. Look past all that and notice how the staff interacts with their residents–are they caring, engaged, friendly, and prompt?
  • Visit several times/and several shifts before making your
    decision–and eat the food for yourself–and if you can, talk to a resident or family member of someone who’s already living there
  • Consider visiting with a friend or someone who is impartial and can notice things you don’t want to–or can’t see.
  • Ask other caregivers if they know about this facility and
    “what’s the word on the street?” Check out a care home rating site such as the ones listed at: http://www.consumerhealthratings.com/index.php?action=showSubCats&cat_id=268
  • Check online for more facility information and reviews–Caring.com lists care homes, facilities and hospices in your area–along with helpful checklists and other info to assist you http://www.caring.com/local
  • Does the facility offer family support services, such as caregiver support
    groups and family event days?
  • Discuss how client and family concerns are handled, what is the
    protocol for disputes? Also find out the procedure for how to move your loved one to another facility if that becomes a necessity.
  • Ask about turnover rate of employees and residents. If people are happy–they stay.
  •  Ask how they screen their employees and how often this is
    updated (know that some care facilities allow employees to have misdemeanors, etc. on their record)
  • Ask to view the ACA survey. It will list the facility’s records on everything from safety records, employee issues, MRSA and other infections, bed sores, accident/fall rates.
  • How is orientation handled and what efforts are made to
    integrate your loved one with the staff and other clients?
  • Find out if your spouse/parent’s doctors/hospital serve this
    care facility or if you will have to find all new doctors. (Many physicians or their assistants visit care homes, which can make it easier than your family member having to make a trip into the doctor’s office.
  • Consider location and how often you–and others–can visit.
  • Consider other location factors–should your loved one stay in their own community where they have friends, doctors, and religious support?
  • Never forget that you are your loved one’s care advocate. Stay involved, hang out, and continue to be aware of their physical, financial, and emotional needs.
  • Visit often and make sure it’s not a “to do” session. Caregiving can strip you of your most important role–to be the spouse, partner, daughter or son. Once your loved one settles in, then it’s time to make an effort to be their emotional support–brighten their day by wearing a smile, bringing small presents, taking them outside (if possible) or bringing them home for a few days around the holidays.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

Other great care facility information can be found at:

http://www.caring.com/articles/caring-checklist-evaluating-an-assisted-living-facility

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