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Archive for the ‘global healthcare’ Category

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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Face it, times are tough.

Can you afford to stay in your own home? Are you well enough to manage everything on your own?

Are you recently widowed and wonder if living by yourself is such a good idea?

Are you a boomer or sandwich generationer wondering how to care for/pay for your kids, your parents and save for your own retirement?

You (or your elder loved one) might be the type of person who would rather live in your own home or with someone you know rather than move into a care facility. Besides, care costs are astronomical. Even with medicare and medicaid, there are still a lot of hidden and unexpected costs, not to mention how challenging it is to find a care facility where you enjoy the people and the staff and get the care you need and deserve.

There are many reasons why family caregiving is a great option–it’s easier to take care of your loved ones if they’re living with you, most people prefer being with or near family, you tend to get better care from relatives and close friends, and it’s cheaper.

No wonder 80% of the elderly population rely on family caregiving.

In today’s precarious economy, it might just be a necessity.

I know of several friends and neighbors who had lost their jobs due to downsizing, budget cuts, and forced (or high encouraged) early retirement. Gas is four dollars a gallon and I almost paid ten bucks for a two pound bag of cherries at the grocery store today. I told the cashier I wouldn’t be buying those, thank you very much.

The strapped economy is hitting everyone, particularly the elderly who have to have their meds, pay for rising electricity costs still get to their doctor appointments. These aren’t luxuries. Nursing home costs are staggering, and not all are covered my medicare and medicaid. On average, the daily cost ifor a care facility s $350.00 a day–and memory impaired units range from about $450.-700.00 a day. A day.

But moving in with your adult children might not be ideal either.

Most people want to remain independent for as long as possible.

How do you stay in your own home? 

Plan early. Look into www.aginginplace.org

Consider long term care, but make sure you go with a reputable company who will be in business and honor their contracts for years to come.

  • When you buy what you think will be your last home, consider city, driving distance, doctor’s, care facilities, and senior resources. Can you live there after you can no longer drive? Can you use a community van or are there taxis? Is your home/bedroom on the first floor? Can you manage the maintance of your house and yard? Plan, plan, plan.
  • Buy property and build a smaller house or a garage that could be converted for a caregiver or family member. It’s an investment you’ll get to keep–and when or if you need to sell, it’s only improved your property value.
  • Consder renting a room–to another senior and split certain home or home health care charges
  • Convert a garage or attic and rent to a relative or younger person. You might even consider rent in  in exchange for services–college age, divorcees, and many people would benefit from this arrangement as well as nieces or nephews just starting out in life
  • Build an apartment onto your home–or if you do move into your children’s home, build one onto theirs so you still have privacy and can come and go as you please
  • As time goes on, consider a small group home run by a licensed care worker who only takes in 4-8 persons–ususally, the charges are less although they can do less for you medically, so consider your health and medical needs in making this decision

How to Live with Family Members Without Hating Each Other

  • Establish rules up front–realistically know you’ll have differences and times when you need to talk honestly about what’s bothering you. Make sure you can sit down and do this knowing you’ll be heard and respected–and that you offer the same in return
  • Know that there will be a honeymoon time, aand a time of disillusionment when you wonder if you made the right decision–but also know that this too will pass
  • Accept that change is inevitable. Don’t pine away for what once was–embrace the now and choose to find the good in each day
  • Give each other privacy–still knock and be considerate of quiet, rest, and alone time
  • Be sensitive–if your loved one is acting odd, they might be going through something they can’t share or verbalize–there’s a time to be tender and patient with each other
  • Plan certain meals or times together–but don’t overdo it
  • Hire caregiving or chore help–don’t expect your family to do it all
  • Find ways to be needed and give. Help out–offer to do a consistent job
  • Try not to complain about your health or living conditions–everything may not be perfect, but it still might be better than your other choices
  • Refrain from commenting on their life choices–how they dress, where they go to church (or not), the state of their marriage–do more listening than advising
  • Make friends and connections, don’t rely on your family to be your everything
  • Smile, be easy to get along with, and show gratitude–it’s contagious, so maybe you’ll get some in return
  • If you do have an issue, don’t let it fester. Sit down, say your peace, have a possible solution in mind, and then deal with it and let it go
  • Eventually–about six months to a year after moving in together, you’ll begin to settle in but it may take up to two years for it to feel like home. You might feel lonely at times, lost and undefined.
  • Be sure to reach out to your new community–join a club, a senior citizen center or a church–make new friends–even if it’s hard or scary, it’ll be worth it. We all need friends.
  • Accept your place of honor and dignity–you hold a special place in the family, but you have to know that and own it first before anyone else does. Embody a sense of wisdom, confidence, and respect within yourself–others will begin to sense it when they’re around you.
  • Expect that at some point you’ll have a big fight or misunderstanding. Families do those kinds of things. It’s okay. Forgive each other. Be quick to say, “I’m sorry.” Laugh about it.  Even if there were yelling and pouting involved, so what? People act crazy at times. Who else can you act up with other than your family?

Family caregiving is part of who we are. No amount of money can buy love. If you’re blessed enough to have a brave enough family who are willing to be togehter, love and care for one another in one way or the other, be grateful.

I was a family caregiver. I brought my mother, who had Parkinson’s and Alzheimer’s, into our home. We built her an apartment onto our home. She lived with us for close to three years. So I know what caregivers face. I know how hard at times, it could be–the physical work, the emotional undertow that gets kicked up, the strain of living together after years of running your own house. All this takes some getting used to.

It’s okay to be mad, hurt, or frustrated with a family member. Families are resilient. They know how to love fierce and forgive easily (or in some cases, eventually). As my friend and fellow author Cheryl Kaye Tardif says, “It’s not about how to live with your family without hating them–it’s about living with your family without killing them! You can hate all you want!”

Emotions come and go. Family committment runs deep.

Life changes and people aren’t perfect, but a family is a great thing to have.

~Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

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We always think that happiness is “out there.”

When I get a new job, when I take vacation, when I lose 30 pounds, when…

Happiness is not that hard. We make it hard. Happiness is having new eyes. A fresh perspective.

After I moved my mother in with us to care for her, (she had Parkinson’s and Alzheimer’s), she used to tell everybody–the postman, the grocery clerk, the pastor, the lawn guy, that she had given up everything to move in with me–her house, her car, her friends, her life.

Apparently she thought I had given up nothing.

I would stand next to her and smile and let her have her moment, get the sympathy she thought she deserved although most people had no idea what to say.

It reminded me of a precocious two-year old I knew who would run in from playing with a tiny scratch on her arm and pronounce to the entire room, “LOOK AT WHAT HAS HAPPENED TO ME!”

There were times as a caregiver (and other times in my life) that I wanted to do that, pronounce it to the world.

But somewhere along in my early adult life (after years of anger and hurt about being adopted and other very painful issues) I got tired of my own whining. I simply wore it out. I was tired of being known as the girl with the problems.

I decided to be the happiest person I knew.

Not a sappy Pollyanna happy type you just want to slap, but deep-down easy, not in your face joy.

It hasn’t been a linear path getting here, but I am pretty darn happy.

One day, while caring for my mom, she toodled into the kitchen, slapped her hand down on the counter and pronounced, “I’m not happy!”

As if I could bop her over the head with my fairy wand and “Voila!” instant happiness.

I looked at her, my mother who truly was a happy (in a self-centered, domineering, the entire world is here to serve me kind of way) person. It just wasn’t easy, and life isn’t always easy. She didn’t like having to leave her friends and move in with me. Her body was giving out and Parkinson’s had taken its toll, also, Alzheimer’s and depression are linked. Most days, she couldn’t toodle into my kitchen. She didn’t like that I had to divide my time away from her to take care of my children and my marriage. She didn’t like that her life was playing out and that sooner, rather than later, she’d die.

But I couldn’t fix any of that.

I just looked at her with this dawning revelation.

If only one of us could be happy, then I’d choose me.

Kind of the life raft theory. Who do you kick off the boat?

The one who most likely won’t make it any way.

Sounds terrible, I know, and I had truly, truly, truly tried to make her happy–and more than that, I had tried to take care of her, keep her safe, keep her alive.

But if the people around you simply choose not to be happy, then realize you can choose otherwise.

Choose joy.

My life is far, far from perfect, and I’ve been kicked in the teethquite a few times, but this morning, I rode my bike for five miles with my ipod on singing my heart out.

I have a new CD–Grey’s Anatomy’s Third Season, and I love the compilation of songs and artists. I belt it out, make figure 8s and circles with my wheels, and dance on the bike (be-boppin’ up and down) and I don’t care what anybody thinks.

Why should I? In the first place, hardly anyone’s home at 10am, and most people I know aren’t happy–or at least they don’t act happy, so why should I care if I’m known as the crazy bicycle singer?

My kids think I’m nuts, but they’re used to me by now.

My morning coffee, my journal, my glider, the sun, my bike, my ipod, my afternoon dark chocolate fix–the warm, strong hug of my husband–these are what I call give me my “happy fix.” They bring me immense daily joy. They cost very little, and I try not to run out or get so busy and stressed that I don’t do these things I love, the very things that sustain me.

Caregiving was grueling at times, and the end was really, really tough–but it taught me to love, to give, to stretch beyond myself, and it was for a season.

Since my mother’s passing, I’ve learned that life is pretty darn short and I better snatch all the sweetness and joy I can. Parts of my life are still crappy, and I’m not always this giddy–I tend to be more so in the spring and summer, so if I’m getting on your last nerve–sorry.

What I hope for you today is based off something I read this morning in Alan Cohen’s Daily Devotional book, A Deep Breath of Life,

April 14th entry:

I used to think I was a perfectionist.

I was constantly finding flaws and errors other people overlooked. If there were many aspects of a job that was done well, I would point out the one area that wasn’t.

But now I realize I was an imperfectionist.

If I was a perfectionist, I would have found perfection everywhere I looked.

***

That BLEW ME AWAY. I hope it did you too.

I plan to become a happyologist.

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

Family advisor at www.Caring.com

Syndicated blog at www.opentohope.com

 

 

 

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If someone microchips their dog we think of them as acting loving and responsible.

Is that a good enough reason to put a microchip in a human? Isn’t that too “big brother-ish?”

We also put dogs to sleep, right? So maybe that’s not the best analogy.

As you can see, microchipping a human is controversial.

Why?

Some would argue it’s an invasion of privacy.

Others would argue it could be used by someone other than a family member or police.

Others say there are health concerns, such as cancer.

We insert pacemakers, steel rods and plates, silicone and collagen into our bodies, surely we can figure out how to make a tiny chip safe (enough) to give us some peace of mind.

What do you think?

You might feel different if you’ve ever lost your mom or dad. If they’ve ever snuck out of the house half dressed or not dressed at all. If they have Alzheimer’s and are not thinking clearly–insist they’re going to catch a taxi–my mother said that constantly even though I’m not sure she had ever ridden in a taxi in her life–and how in the world did she happen to remember that word but not her own daughter’s name?

Many, many, many night, I caught my mother trying to escape. We had several safety measure on the doors, and an alarm system that would beep if any doors or windows were opened, but still, I worried. She insisted she had to go preach, had to go to church, needed to go to the store and mostly….she needed to go home.

I was also worried because there was a river in our back yard and a 17 foot bluff/drop off. That didn’t seem to register to mother who was drawn more to the driveway and the street. We caught her in the bushes–a lot. And I was a vigilant caregiver. She was just slippery. I actually thanked God she had Parkinson’sto slow her down. Terrible thing to be thankful for, but as I see other moms with Alzheimer’s, and knowing my mother’s strength and fiestiness, I was grateful for any deterrent.

Why “chip?”

  • So they won’t get out and get hit by a car.
  • So they wont’ be kidnapped, raped, fall, wander in the woods.
  • So that so much time doesn’t lapse that they miss crucial medications.
  • So that if they take a car, bus, or train, you’ll know and won’t spend precious minutes, hours, or days in absolute panic and terror.

So yes, I would microchip. Give the benefits of the chip outweighs the risks.  I think. 

Let’s not confuse the issue here: most microchips simply hold information so that if/when the person is found, the information can be “read.” Most of these chips are not tracking devices. Technically, they’re called RFID–Radio Frequency Identification Device. 

One of the major controversies has to do with several studies that suggest that these implanted devices could cause subcutanous sarcomas — malignant tumors. This isn’t due to the radio frequency, it’s simply due to something foreign being under the skin (the tumors develop around the chip itself. Opponents argue that of the 10 million chipped pets, this isn’t a major issue, but it is something to think about.

So now, I’m back to wondering, would I?

The chip will only help “mom” out when someone (the police, etc) find her. If she’s stuck out in the woods tangled in briars, it won’t help?

I guess in my situation, I wouldn’t have been overly concerned about the cancer, considering her age and the greater risk of her getting lost–but I’d only do it it kept my mom safe and allowed us to find her quickly. I would want her found minutes, not days later.

One major microchip company that has recently been in the news is Verichip.

The chips about the size of a grain of rice and contains a 16-digit identification number which is scanned at a hospital. Once the number is placed in a database, it can provide crucial medical information.

This chip is now being tested in about 25 Alzheimer’s and elder/ill persons in Palm Beach,  and Del Ray Beach, Florida.

Here are some articles on microchips so you can decide for yourself:

http://abcnews.go.com/GMA/OnCall/story?id=3536539

http://gizmodo.com/gadgets/elder_tracking/rfid-microchips-implanted-into-alzheimers-patients-294731.php

http://www.time.com/time/health/article/0,8599,1672865,00.html

Memory disorder units use various types of wander protection for their residents. They have to. This is different than microchipping, but eventually, microchipping will be incorporated into this system. If you ever have to place your loved one somewhere due to Alzheimer’s, then you’ll need to know how they safeguard their residents. A building full of Alzheimer’s patients could spell disaster without a decisive protection plan. That’s why these units cost so much. You can expect to pay 4-6,000 dollars a month. (gasp)

One such system is Roam Alert, and here’s a diagram of how it works in a facility. Each resident must wear a non-removable band. While this may cause skin irritation and some patients obssess about it, it’s a necessary component.

 

 

Benefits to the wanderer:

  • Freedom to interact with other residents
  • Freedom to use facility’s resources
  • Safety from wandering into dangerous areas

 

To cognitive residents:

  • Freedom to mingle with all residents
  • Avoid “prison lock-down” image

 

To the facility:

  • first line of defense
  • Insurance coverage
  • Quick response to wandering

I’m not endorsing anything here, I’m just using these companies as examples of what’s out there. Most family caregivers are too busy doing the actual care–driving to the docs, cleaning up, meds, and food prep to have the time or energy to do all this research.

I can’t help but believe that this is all a matter of time until we track and chip our loved one’s who cannot make good judgements. We will have to reconcile our sense of moral obligation in regard to privacy issues with our moral obligation to keep them safe.

Will there be abuses? I’m sure. Just like all technology, it’s amoral and up to the user to be ethical. We can already track people by their cell phones, and as the numbers of Alzheimer’s patients swell, this will not only become big business, it’ll become a national concern.

If not the chip, how do we keep mom and dad (or our husbands and wives, sisters and brothers) safe?

I’m just asking because I truly don’t know the answer.

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

 

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Are you in your 60s or 70s and caring for your parents?

Are you in your 20s or 30s and caring for your parents of grandparents?

Either situation is not that unusual today in the realm of caregiving.

I had the dilemma of being relatively young and having older parents to take care of–I was adopted and my mother was exactly 50 years older than I am.  

My dad died at 78 and I grew up in a house where doctor visits and hospital stays were common–Daddy had back surgery, intestinal surgery and heart surgery (several) all while I was a child. I never remember there not being pills to hand Daddy.  I remember singing in the hospital stairwells for hours as my pre-teen voice belted out Michael Jackson and Donny Osmond hits that echoed down ten flights of stairs.

I was a caregiver kid.

As much as I spend time sharing about caregiving and my mother who had Parkinson’s and Alzheimer’s, it was my dad’s passing that hit me the hardest. I was 24 (Daddy was 54 years older than me, my mom, 50). I adored him. He called me his little sweety-pie and we had one of those special bonds that went beyond words.  I grieved his passing immensely and yet feel that he will always be with me.

Then, I became my mother’s sole caregiver.

Her 70s and early 80s were pretty good even though she developed Parkinson’s. I went to her house a couple of times a week and did things she couldn’t do by herself–my husband kept her gutters clean, did man chores. She enjoyed church and friends, and then the issues started: driving, the falls, the forgetfulness, the financial mismanagement, the paranoia of being robbed. I now see that while some of these fears and issues are normal, hers were exasperated by the early stages of Alzheimer’s.
Her late 80s were not as easy as dementia/Alzheimer’s set in and Parkinson’s began to take its cruel and twisted toll.

I became her full-time caregiver and eventually had to move her into my home while I was still in my 30s and raising kids. I wanted to, not that I knew what I was getting myself into, but by that time I loved her even more and knew she needed me.
This isn’t so unusual with people marrying and having kids later, so many sandwich generationers will face this age factor–and I know of so many wonderful granddaughter’s and grandson’s caring for their grandparents. They’re from divorced or dysfunctional families and their grandparents represent family and stability they didn’t have any other way.
The other scenario is the situation I will eventually face–I was in my 20s when I started having kids, so when I’m in my 90s, my kids will be in their 70s.

Will they be able to care for me?

Do we saddle the grandkids with two generations to care for?
Family care is still the best form of care (most times) because of the love, loyalty and commitment, but it has to be supplemented with lots of community and state resources both financially and in the form of adult day cares, home health care, and hospice. I also believe in the proper amounts, family caregiving is good for the family–it teach patience, sacrifice, commitment, integrity, and allows the generations to get to know each other on an intimate level that visiting a care home once a week for a couple of hours can never foster.

But what about the throngs of young adults who will choose not to get married or not have kids?
Nursing, psychology, sociology and anthropology classes will have to add a new chapter to their text book as society morphs and we face these new issues both individually and collectively.

~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/mothering

www.caring.com/familyadvisor

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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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Caregiving is complex.

Many family situations are a continuation of a long, tangled history.

There are stubborn siblings, financial headaches, cantankerous parents, emotional memories kicked back up, frustrating home heath aides, and confusing health insurance concerns. This is just the surface–throw in worries like a naked, wandering Alzheimer’s loved one, your mother feels cheated on (or is cheating) while her husband is in a facility and no longer remembers any of you, your home health aide stole your wedding ring (you suspect), you lost your health insurance and have to go back to work, but how? Or maybe your mother is like mine and kicks your cat or your partner says caregiving is killing you and insists you give them attention too.

I know how hard it is to find safe, how challenging it is to find reliable help, or you get into a big fight with your dad (and your neighbor) because he ran over your neighbor’s dog and he still refuses to give up driving. Some questions go even deeper–you’ve become hooked on pain meds to compensate for your back from all the lifting and you’re fighting depression, or just how bone-deep scary it is to think that you have to decide whether or not to stop life support and you’re afraid all your family will blame you for not doing enough…the list goes on.

I”m now a “Family Advisor” on www.Caring.com, and these are just some of the types of issues families write about.

It’s not that I’m a know-it-all or that questions always have neat little answers, but I’ll do my research and offer suggestions that are not just technically correct but delve into the heart of the matter. Relationships are not cut and dry, and it’s not easy to just make a decision and carry it out–not when there are other family members involved who may not agree with you–and not when even the decisions that you have to make aren’t easy to deal with emotionally.

Life can’t always be “fixed,” but I’ll do everything I can to offer some valid help and direction as well as support you, the caregiver/spouse/friend. It won’t be cut and dry either. Humor, spunk, and tenacity are great weapons people forget they have, and sometimes we have to use guerrilla tactics to get anything done, but when integrated with love and commitment serendipity can occur.  I won’t sugar coat caregiving either, or wrap it up and slap a bow on it, or belittle the guilt or everyday stresses can just get under your skin.

I know how all this eats away at what fragile hope you have remaining.

By writing a question (even anonymously), you are asking not only Caring.com for advice, you open the window for opportunity. I firmly believe that by simply asking the question you start to attract the answers/solutions. By verbalizing your fears, frustrations and concerns, you can then begin to visualize how this can be solved or at least some of the tension relieved.

You’ll feel less alone. You have options.

If you know of anyone who is in an emotional or ethical quandry consider suggesting Caring.com.

They have sections for all types of care–mental illness, cancer, MS, diabetes, Alzheimer’s, and many other points of connection.

Caregivers need every resource they can get their hands on–in their community and on the Internet.

I hope that my book, my blog, and now this family advisor column will help you feel less isolated and show you that you’re not alone. You’re surrounded by people who care.

~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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