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Who is an invisible caregiver?

Millions of spouses, adult children and friends who are caring for someone they love–but having to “do it on the sly.” It’s a tough transition, to admit you need care. After decades of being the strong one, the provider, the professional, the hub of the family, admitting that you need help in and out of the bed, in and out of the car, or down the stairs because of a chronic illness, disease, or after surgery can feel like a blow to the ego.  And it’s not who they are. Call is pride, but there’s a time in a person’s life when they aren’t ready to admit they need care. Their worth goes far beyond their need for help.

I met a gal last week who is caring for her husband, but it’s not a label she gives to herself. He has MS and is in a wheelchair. He’s on disability and yet he strives to see himself as he always was–a competent businessman, father, friend and spouse. He is–all those things–but he needs a little help now and then.

They married last year and their devotion and honeymoon love is obvious. They look at each other with such tenderness. She walked into this relationship eyes open. His disability isn’t what she fell in love with–it’s his charm, his wit, and his generous spirit. But his disability is something they have to work around.

She helps him dress–on difficult days. She makes sure his meds are delivered on time and she helps him sort them and reminds him occasionally (wives tend to do that–some people call it nagging but it’s all in the interpretation). She washes his hair. She works her schedule around his so she can accompany him to doctor visits so she can help manage his care. And since he’s prone to infection, she takes extra care to keep their environment germ-free–and keeps masks available for when they’re out in public during flu season.

The other night, he had a fever and decided to sleep downstairs on the couch. He just didn’t have the strength to head upstairs, change clothes and do his normal bedtime routine. She slept in the recliner next to him and checked on him several times that night–to make sure his fever didn’t spike.

Yes, technically she’s a caregiver. But her husband is a young 50 years old,  and his disease takes such a toll on his life and health that she doesn’t want to see him as needing care. He wants to be seen first as a man. That’s how she chooses to see him as well.

There are times when naming something brings a sense of relief–so that’s what it is. The definition helps define us. And then there are times, as in this gal’s case when it changes the relationship. She’d rather be an “invisible caregiver.” She’d rather consider herself his wife, his companion, his confidant.

Caring for a spouse isn’t a role. It comes with “I do.” All the invisible caregivers out there–spouses, children or friends do it out of love and loyalty. They choose to camouflage the care they give in order to keep the emphasis on the relationship–to give their loved one the dignity and respect they deserve.

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Are you already hearing people cough and sneeze in the grocery store?

I am. It seems as if the cold and flu season has hit early, and older adults and people with chronic diseases are at the greatest risk of problems associated with the flu.

But what if your loved one has late-stage Alzheimer’s, dementia, ALS, or Lewy Body, they’re not exactly communicative–not in a helpful way, any way. 

How do you know if someone with a memory disorder or a speech problem is sick?

  • Look for change in behavior–are they more agitated? Less? Lethargic?
  • Look for skin changes–do they look flushed? Pasty? Change is the key word
  • Are their hands usually cold due to poor circulation–are they now warm and beet red? Or vice versa?
  • Try the kiss test–I can tell a fever by kissing their forehead or cheek–more than by the back of my hand
  • If you don’t go to the bathroom with them, you might need to–check for changes, smelly urine, diarrehea
  • Look at their tongue–does it look white?
  • Use a flashlight to look at their throat–do it to yourself first and let them look at yours
  • Are they like a little kid and pulling on their ears?
  • Are they making a great effort to swallow?
  • Does their abdomen look bloated? Will they let you press on it–is it tender?
  • Check their urine for a foul smell, cloudy, bloody, or low output–signs of infection or dehydration–both common in our elders. Check out my blog post, UTI’s Don’t Let Your Elder Suffer in Silence”
  • Do a full body check every few weeks–it’s easy to miss a broken bone when they can’t tell you it hurts

You need to take your mom or dad to get their flue shot, but as their caregiver,

you need one as well.

 Most caregiversdon’t have a lot of “back up” options–not the spur of the moment kind, the kind you can call because you’re running a 101 degree fever when you get up in the morning and your throat feels like a gravel road. So do all you can to prevent getting sick this winter.

So head to your doctor, your pharmacy, or wherever you read about is offering free to low cost flu shots and roll up your sleeve. You don’t want to be the carrier that brings it into your house.

Why are our elder so suseptible to colds and flus?

Because older adults have reduced cough and gag reflexes, which means the infection just sits and gets worse. They also have weakened immune systems that comes with age, and sometimes the medications they’re on, and that makes it harder for their bodies to fight flu complications such as pneumonia.

Did you know that of all age groups, those over 84 have the highest risk of dying from flu complications?

Second highest category? Those over 74 (which in many cases, are the spouse or caregiver). 

The next category are children, age 4 and younger. 

How can I tell if my loved one has the flu?

Obvious flu symptoms:

  • fever (usual)
  • headache (common)
  • tiredness and fatigue (can last 2 or 3 weeks)
  • extreme exhaustion (usual at the start of flu symptoms)
  • general aches and pain (often severe)
  • chest discomfort, cough (common and can become severe)
  • sore throat (sometimes)
  • runny or stuffy nose (sometimes)

Less obvious symptoms:

 Look for gastrointestinal problems that can accompany the flu?

Sometimes stomach symptoms, such as nausea, vomiting, and diarrhea, may occur with the flu. But these gastrointestinal symptoms associated with the flu are more commonly seen in children.

What flu complications should older adults watch for?

Complications of flu for older adults may include the following:

  • pneumonia
  • dehydration
  • worsening of chronic medical conditions, including lung conditions such as asthma and emphysema and heart disease

It’s important for your elder to see your doctor immediately if you have any of these flu complications. They simply don’t have a strong enough immune system to effectively fight off the flu. 

How can older adults prevent getting the flu?

The best way to prevent the flu is to get an annual flu shot.

Because the flu viruses change each year, older adults need to get a flu shot each year.

According to the National Institute on Aging a flu shot for the elderly

has the following benefits:

  • reduces the risk of hospitalization by about 50%
  • reduces the risk of pneumonia by about 60%
  • reduces the risk of death by 75% to 80%

Where can older adults get a flu shot?

Visit http://www.flucliniclocator.org. Enter your ZIP code and a date (or dates) and you’ll receive information about flu shot clinics scheduled in your area.

Can older adults use the nasal spray flu vaccine?

FluMist is a nasal spray flu vaccine that contains a live flu virus. FluMist is not recommended for adults over age 49.

When should older adults get flu shots to prevent flu and flu complications?

The flu season can begin as early as October and last until May. It’s recommended that people get a flu shot in October or November so the body has a chance to build up immunity to the flu virus. It takes two weeks for the flu shot to start working. Still, if you miss the early flu shots, getting a flu shot in December is wise.

How is flu treated in older adults?

  • Get plenty of rest.
  • Drink plenty of liquids.
  • Ask the doctor or pharmacist before buying a new over-the-counter cold or flu medicine to make sure it won’t interfere with prescribed medicine.

Antiviral drugs are also available by prescription to treat the flu. The antiviral drugs must be used immediately upon having symptoms of flu. These drugs work by blocking the replication of the flu virus, thus preventing its spread. Antiviral medications for flu include:

  • Tamiflu (oseltamivir)
  • Relenza (zanamivir)

If antiviral drugs are taken within 48 hours after the onset of the flu, these drugs may reduce the duration of flu symptoms. Sometimes antiviral drugs can also be used for prevention if someone is exposed to a person with the flu. Talk to your doctor.

Are there warning signs with flu that older people need to watch for?

Call your doctor immediately if you have any of these signs and symptoms with the flu:

  • You have trouble breathing with flu.
  • Your flu symptoms don’t improve or they worsen after 3 or 4 days.
  • After your flu symptoms improve, you suddenly develop signs of a more serious problem including nausea, vomiting, high fever, shaking chills, chest pain, or coughing with thick, yellow-green mucus.
  • You become lethargic to the point of not being able to communicate
  • Your fever goes above 101 and does not respond to Tylenol or Advil
  • You become extremely dizzy and fall
  • You stop putting out urine–you can’t keep down any liquids and you become dehydrated

Being a caregiver means being alert–your elder could take a drastic turn for the worse. Pay attention to the warning signs, and when in doubt, call your physician.

Do all you can stay healthy and strong.

Take mega-doses of Vitamin C. Get your rest. drink your liquids, wipe your hands often when out in public with a disinfectant gel or spray. Take Zicam or other cold preventative at the first sign of a cold–and avoid people who are actively coughing or sneezing.

I’m Carol O’Dell–and I hope you visit this blog again.

And check out my book, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

Carol O’Dell is a family advisor at www.Caring.com

www.mothering-mother.com

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We avoid thinking about or dealing with death at every turn.

Even caregivers who are caring for their aging parents try not to think about the inevitable end.

 

 

Cancer, Alzheimer’s, heart disease, stroke, diabetes, combined with age will eventually claim the lives of those we love. And sadly, by not fully anticipating and participating in this momentous event, we’re left scared, in doubt, and not knowing how to die–or be with someone we love when the time comes.

 

Who will teach us? How will we learn?

 

 

I recently interviewed a Rachel, a young mother in my community who experienced a tragedy–she lost her two year old little boy, Tyler, in a swimming pool accident.

 

 

As I sat with Rachel and listened to her story, I immediately sensed she had wisdom and insight well beyond her years. She’s handled grief with grace, forgiveness, and determination.

 

 

My own worries seemed insignificant.

 

Rachel’s story got me to thinking.

 

 

How will we remember our loved ones?

 

What memorial, statue, headstone or story will honor those who have touched our lives?

 

 

While I have nothing against cremation, sometimes people need a place to go–it’s important to create a sanctuary or sorts–a place to be, to pray, to think and meditate. 

 

A place to remember.

 

 

My Daddy is buried in Atlanta, and so this Father’s Day, I’ve had to create a new place for “us” to meet and talk.

 

I like to spend a few minutes catching up with my daddy about my life.

I have a bench overlooking a lake in my backyard. He would have liked it here. He loved to sit outside and talk.

 

 

That’s where I’m headed this Sunday.

I’m including an article I recently wrote about Rachel and a place of remembrance for all those who have lost someone they love.

 

As you read her remarkable story, I’m sure you’ll agree–we can all learn from her–how to love, and how to hope again.

 

 

Angels Among Us 

 

There’s an angel on Amelia Island. The childlike face lifts toward the sky, arms outstretched as though holding something invisible, and bronzed wings gleam against the stark Florida sun. The inscription at the bottom of the statue reads, “Angel of Hope.” It is encircled by a short brick wall and eight benches for seating with a loved one’s name on each one.

 

I found this “Angel of Hope” one afternoon on a photography/bike trek around the island. I stopped to take a picture and began to read:

 

The inscription on the back of the statue reads, “The Christmas Box Angel,” and I thought of Richard Paul Evans’ book, The Christmas Box, about a woman who mourns the loss of her child and finds comfort at the base of an angel monument.

 

At the base of the angel I read, “For all the children” and began to put it together—the benches, the names, the stones lined up at the base, the bouquet of flowers indicating someone had been here. 

 

This angel is a place of remembrance for families who have lost a child. It’s a sacred gift given by other bereaved parents and is available to anyone who would like to come, sit, and remember. 

 

I thought of Tyler, a purely sweet loving laid-back two-year old with beautiful big brown eyes, the son of Rachel and Patrick Pennewell. I remembered the day I found out Tyler had suffered a swimming pool accident.

 

Rachel, his mother told me, “Tyler was our angel. He had a purpose in being here. Sometimes I would just look at him. He was such a calm, knowing soul, and I’d wonder, you know something, don’t you? Some things be understood here on earth.”

 

After Tyler’s passing, Rachel and Patrick found the community of Nassau to be their angels who sustained them in those early weeks and months when shock turned to grief. 

 

“I’ll never be able to thank the people at our church and in our community for all they did. How can I ever show them what this meant to us?”

 

Rachel said it’s so important for bereaved parents to find ways to give back because, “What else can we do? You don’t stop being a parent. You have to find a way to give, and in that giving, your child lives on.”

 

I asked Rachel how she got to a place of peace.

 

“Tyler’s life completely transformed the way I saw myself, and that lives on today. He brought such peace into my life, from the moment of conception on; it was as if he had a mission. Patrick and I now have a second child, Hannah, Tyler’s little sister. I promise, Tyler helped pick her out. In so many ways, he’s still with us. He’ll always be with us.”

 

As I stand in this circle and read the names on each of the benches that surround this angel, I wonder who each one of them are, what their stories are, because it’s our stories that connect us–not the how did-he-die stories–but the deeper question: how did he live?

This Amelia angel creates a circle of hope; the hope and belief that each child’s life, no matter how short of a time they spent on earth, is a gift. If you look closely at the angel’s right wing, you will see the word “hope.”

 

The golden moments in the stream of life rush past us

 and we see nothing but sand;

the angels come to visit us,

and we only know them when they are gone. 

                                                                                                          ~George Elliot

 

Christmas Box Angels are erected in more than 25 other communities around the world.  http://www.richardpaulevans.com/statue.html

If you’d like to view a photograph of this statue, it’s posted on my website at http://home.comcast.net/~cdodell/ (www.mothering-mother.com) on the Caregiving Tips page.

~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

www.kunati.com Publishers

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Last night, the television show Boston Legal had one profound moment relating to Alzheimer’s.  

The premise is that one of their leading characters, Denny Crane (played by William Shatner) has early Alzheimer’s. He’s a brilliant attorney who has never lost a case–and he’s part owner in firm. The other law partners are hesitant for Denny to continue to litigate. Not only is he forgetful, he sometimes does or says bizarre things. Things Alzheimer’s patients might say or do.

Great scenario because I happen to know a great law professor from Yale who lives in my community who now has Alzheimer’s. You can be homeless and live under a bridge–and have Alzheimer’s, AIDS, or cancer–or you can be the president of the United States.

At one point, Alan, Denny’s best friend is having a conversation with Jerry, another lawyer in the firm, (who suffers from Asperger’s syndrome) about what a phenomenal job Denny did in court. Jerry blurts out, “Too bad Denny’s dying from Alzheimer’s.”

Alan is shocked. Insulted. He retorts:

“Denny’s not dying from Alzheimer’s. He’s living with it.”

There’s a great distinction here.

One of the drawbacks to early diagnosis is giving up too soon.

Early detection should mean that you receive proper medication, spend time with your loved ones, and make plans to live–not die.

In the case of Alzheimer’s, the average patient lives 8-10 years, and even longer depending on the age you contract this disease. Parkinson’s, ALS, MS, and other diseases can even offer a longer lifespan. Coincidentally, the average caregiver spend 4.3 years caregiving–leaving a bit of a discrepancy here.

The message is: don’t give up too soon.

Don’t hear a diagnosis and go home, draw the curtains, curl up in a fetal position and wither away.

As a family member or caregiver, it’s a blow to hear that your loved one has a terminal illness, but you still have to get up and face each day.

Michael J. Fox says that Parkinson’s is “the disease that keeps on taking.” He’s chosen to live with his disease. He’s chosen to do this for the millions who look to him and rely on him to raise money for research, for the difference he’s already made, but I’m sure he does this even more for his wife and his children.

A recent example is Ted Kennedy’s diagnosis of a malignant brain tumor. He had a seizure and went into the hospital just last weekend. Yet today, he and his wife, Vicki went sailing. He loves sailing and the Boston Globe said he “finds renewal on the water.”

Ted Kennedy is actually teaching his family and others how to treat him. The Chicago Tribune wrote, “Kennedy’s cancer is dire, not hopeless.”

It’s proven that prayers and good thoughts can impact people’s lives clear across the country–and we can create the atmosphere and attitude around us by how we handle our own bad news.

Maya Angelou says, “We teach people how to treat us.”

Yes, it’s natural to feel kicked in the gut.

It’s natural to take to the bed, cry, get angry, lash out or pull in. Don’t beat yourself up for going through this very natural stage.

But after that, it’s time to move on.

You (or your loved one) most likely won’t die tomorrow. Or the next day.

So you take your meds, maybe get physical or occupational therapy. Change things around in your home, hire a home health aide, buy a walker or scooter or whatever else you need. Life is different. I don’t doubt that. But life can still be good.

You can still find joy–and purpose.

Sometimes our purpose is nestled in our situation. Sometimes something–or someone arises in our midst and a window opens where a door shut.

Yet, there will come a time–hopefully in the distant future when the tide turns again.

You, or your loved one may die from this disease, I can’t promise you won’t. 

If not, from something else.

We have to eventually accept that as well. Another transition. Another acceptance. Another change.

But until then, live, live, live, live, live.

~Carol D. O’Dell

Check out her book, a day-to-day, intimate and honest look at caregiving…

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

www.kunati.com/mothering

 

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You can’t watch someone you love struggle with a disease and not be affected.

But what can you do?

As a caregiver, family member or friend, you can’t make it go away.

Alzheimer’s and Parkinson’s are two debilitating diseases that are slow and grueling and take a toll on people’s spirits, and affects everyone around them. For some, they turn into fighters, but even fighters get tired. 

You can’t offer your bone marrow or donate a kidney–you feel helpless to help.

And yet, there’s a group of family and friends who are doing something phenomenal to raise funds and awareness to fight these two monster diseases.

It’s called:

“10 Mountains – 10 Years” – A Quest for the Cure.

 

 

One decade long, 44 ½ vertical miles high, 7 countries, 6 continents and 2 diseases.

The Regulars” an international team of climbers has begun to mount what may very well become the grandest, most physically demanding, and exciting campaign to raise awareness and funds needed to help find cures for Alzheimer’s and Parkinson’s disease.

“This years team has the most dynamic line up to date”, said team captain Vincent Roland Simone. “The team will range from inexperienced to experienced, and from 11 years old to 50 years old. In the end I honestly believe regular people will play a big part in conquering these diseases”.

In 2006 “the Regulars” began their epic on Mont Blanc (France) the highest peak in continental Europe. Collectively their route around the globe from Mont Blanc to Everest 2015 will be named a “A Trail called Hope”. Each year the expeditions will be attempted in honor of the collective 30 million family’s world wide who have been directly impacted by these diseases, the care givers who ease the struggle of those affected, and the scientists who diligently battle to find a cure. A victory in reaching these summits is symbolic of overcoming the many challenging milestones in medical research and funding needed to find the cause and a cure for Alzheimer’s disease & Parkinson’s disease.

According to the Alzheimer’s Association, “an estimated 5 million Americans have Alzheimer’s disease.” Unless a cure is found, “by 2050 the number of individuals with Alzheimer’s could range from 11.3 million to 16 million.”

None of these figures account for people affected in other countries. There is no cure.

Today more than six million people worldwide are living with Parkinson’s disease, and 40% of those people are under the age of sixty. Currently one of the youngest people diagnosed was 8 years old at the time of diagnosis. Over the course of this year 60,000 new cases will be diagnosed. There is also no cure for Parkinson’s.

The “10 Mountains – 10 Years” (a quest for the cure) project is unique in a number of other ways:

• Supporting two major high profile organizations: the

 

 

 

Alzheimer’s Association & the Michael J. Fox Foundation

• The first climbing / awareness / fund raising event to span a decade, climb more than 44-1/2 miles into the sky, endeavor to reach 10 mountain summits in 7 countries, on 6 continents, in an effort to help conquer 2 diseases.

• A yearly opportunity for people, media, corporations, scientists, and governments to revisit the topic of each disease. The 10/10 project is a look back into the past year to assess the strides made by all of the above, it is also a look ahead to goals being set in research for the coming year.

• Ultimately, it is a story of how a small group of

 

 

regular people can decide that they can make a difference – great or small – then follow through with their personal promise to make it happen.

 

This year on Independence Day

 

 

 (July 4, 2008) four of “the Regulars” returning team mates will join Eileen Colon /Bencivengo on

“A Trail Called Hope – III – Mount Hood”

Collectively she will join additional team mates from Texas, Colorado, New York, California and England on the mountain in hopes of reaching the summit and helping to raise awareness for the cures. One team mate (a retired fire fighter turned photographer) residing in Colorado suffers from Young Onset Parkinson’s and will join the Regulars on the Mount Hood summit climb in hopes of inspiring others with Parkinson’s and or Alzheimer’s to never give up on themselves.

The team for “A Trail Called Hope III – Mount Hood”, which is third in a set of ten mountain climbing expedition will be the following:

 

 

 

Team Captain:

 

 

 

Vincent Roland Simone (41) – New York.

Team:

Eileen Colon / Bencivengo (50) – New Jersey

Eric Buzzetto (27) – New York

Daniel Simone (40) – New York

Tyler Simone (11) – New York

Brett Curtis (32) – United Kingdom

Jennifer Yee (24) – California

Matthew Jimenez (21) – Texas

Troy Parker (46) – Colorado

Cy Maramangalam (28) – New Jersey

In 2007 Jennifer Yee an independent film producer and owner of Back Light Productions joined “the Regulars” team. Backlight Productions began to film a multi part film documentary in September 2007. The documentary will not only follow the efforts of “the Regulars” over the course of their decade-long mountain adventures in raising awareness and funds, but also document the progress and setbacks made in Alzheimer’s and Parkinson’s during the coming decade. The first release will focus on the events surrounding the Mount Hood Climb.

***

I recently talked with Eileen Colon, one of the newest members who’s putting on a fundraiser this Saturday, May 17th to raise funds for their upcoming climb. I wanted to know what (or who) inspired her, and why, at 50 years old is she climbing her first (of many) mountains?

Here’s our discussion:

What was your first encounter with Parkinson’s?

My first encounter with Parkinson’s Disease came when my sister-in-laws father was diagnosed with it late in his life and passed from it.
There are two wonderful friends of mine that I met through Myspace that have Young Onset Parkinson’s Disease.
I have formed a team “Jim’s Gems” for two years now and have taken them to NY for the Unity Walk. I did this in honor of my good friend Jim who has the disease. My other good friend, Ken Glowienke, from Focus on A Cure for Parkinson’s, also has YOPD. I met him for the first time last year at the Unity Walk. He flew in from Chicago to be part of my team. Our friendship is one I cherish with all of my heart. He has the most beautiful and loving wife and I share a special friendship with her also. Jim and I train in the martial arts under the same association so we are always thrown together at tournaments and special events. I cherish my friendship with him also. He was my inspiration in becoming involved in the Parkinson’s community on Myspace and for bringing Enzo to me from the Regulars.
Who all has been affected by Parkinson’s in your life and how has their struggle made you look at your own life?  My mother had Parkinson’s for close to 15 years, and so I’m quite familiar with the issues that arise. My mother always had a tenacious spirit, but I found that Parkinson’s made her even more determined to be independent for as long as possible. Is this true among those you know who struggle with PD?
I look at life very differently now. I make myself walk in there shoes. I fight for every one I know with this disease plus the ones I don’t know. I take my role as an advocate very seriously. I want to ensure my own children will not be faced with this. I posted a blog about the heart of an advocate on my Myspace page. It says it all for me.
I walk and now climb, fundraise and draw awareness for those that can’t. As long as God gives me the strength to do this, I will. And when the strength to physically do this runs out I will still advocate in other ways. I look at life as a gift. Each day that I wake up I thank God for giving me this day to continue being a good mother to my children and for still being able to advocate.
The two men I speak of have the most tenacious spirit and determination to beat this disease that I have ever seen. There are so many others that I don’t know quite as personal who also fight this fight with there heads held high. As we hope for a cure, and it seems so close, there fight becomes stronger and stronger. They are true inspirations in my life. They push me to help get them closer to a cure. They are my heroes.
Tell me about your fundraise on May 17th and what are your goals?
My fundraiser this Saturday is part of my efforts to raise funds and awareness for Alzheimer’s and Parkinson’s disease in conjunction with my team The Regulars. It’s hard to say how much I will raise. It is an Open House for my karate studio also and it will be advertised in the paper. So it depends on how many people show up over the course of the day. I have been in karate all week selling Raffle Tickets for a Chinese Auction I have going on.
How did the “Ten Mountains in Ten Years Project” get started?
Enzo Simone from Amawalk, NY divised the 10 mountains 10years project. His mother has Alzheimer’s and his father-in-law has Parkinson’s. I had the pleasure of meeting them both at the Unity Walk in April as Enzo came in to join me with my team.
The mountains:
Mount Blanc – France
Cotopaxi/Chimborazo – Ecuador
Mount Hood/Mount Shasta – USA
Aconcagua – Argentina
Kilimanjaro – Tanzania, Africa
Mount McKinley – Alaska
Mount Elbrus – Russia
Cho Oyo – Khumbu Himalaya Nepal/Tibet
Vinson Massif – Antartica
Mount Everest – Himalaya, Nepal/Tibet
How’s your training going?

My training is going well. I threw on my backpack for the first time on Mother’s Day and went for a hike. It was a challenge but I eventually got a feel for it. I train almost every day. Six days a week but now I am training everyday.
Can anyone join in at any time?
Anyone can jump on board at any time to be part of the Regulars Street Team. However, the climbs are planned and you either receive an invitation from Enzo or you send him a message saying you would like to join one of his climbs.
I received “The Call” on Myspace because we were friends and he was impressed by my advocacy work on my other causes. I accepted and my journey began.
How has this changed your life already?
I challenge my body on a daily basis. I was an athlete from the time I was in third grade. When I married at 22 and had my first son, my atheticism slowed down. Occassionally exercising. Life dictated other things and I had three more children and never had time. When myone son joined karate it sparked my interest. I eventually signed on and have been training in the martial arts for over eight years. I am a second degree black belt. Testing is grueling so a lot of preparation goes into getting to that point. I have walked 60 miles in three days for Breast Cancer, two years in a row. When Enzo asked to join his team I doubted myself for a second or two and then went in head first to get ready.
It is very challenging to train everyday and still be mom and run a household. I feel my boys are inspired by me. They see there mom going out there and proving at my age, 50, anything is possible. And it is. So I look at my boys and I step up to the plate and do this for them.
***
I have to say, I am impressed and humbled by this small band of “regular people” and their devotion to those they love and their fight against the diseases that have so deeply effected their lives and the lives of those they love. This is love in action.
Anyone out there who feels stuck in their own life, who is also affected by this disease–either as a caregiver, friend, or person struggling with this disease, I hope you’ll consider contributing to this cause–and cure.
We all long to be a part of something that makes a difference, and Alzheimer’s and Parkinson’s take so much control from our lives and our bodies. By finding a way to give–or help spread this message (please feel free to cut and paste and send this blog to anyone and everyone), you’ll get a little bit of control back. You’ll feel that you contributed your grain of sand–and each grain helps tip that scale.
As a small added incentive, if you do happen to purchase my book, Mothering Mother: either on Amazon, Barnes & Noble.com, Target.com, or order it from your local bookstores, between now and July 4th, email me at writecarol@comcast.net to say you’ve done so, and I’ll donate two dollars per book to this cause.
Mothering Mother was written in “real time” during the last three years of my mother’s life. It tells the truth about caregiving and family life. It doesn’t just focus on the bleakness of the situation, but also incorprates the hilarious moments, the mother-daughter fights, the contempletive thoughts of life, and the nitty-gritty details that often get glossed over. I wrote it because I felt so alone and isolated. I needed something for my soul, my intellect, my creativity–something that incorporated what Parkinson’s and Alzheimer’s does to relationships and how you see yourself. I hope it touches it lives of many who find themselves on a similar journey.
My mother suffered with Parkinson’s for 15 years–and I became her companion, I stood in the doorway as she trembled, as she tried so very hard to will her body to move.
During the last three years of her life, she moved in with my family and me, and then she developed Alzheimer’s (I suspect it was there before and I was too much in denial and exhaustion to recognize it). I know too well what these disease does to your life, your head, your heart, your faith, and your spirit.
None of us could make it without our support.
I hope you’ll find a way to spread the word, give, and cheer on this courageous team.
available on Amazon or request it at your favorite bookstore
Family Advisor at www.Caring.com

Syndicated Blog at www.OpentoHope.com

 

For further information please visit the Regulars website:

 

 

or http://www.myspace.com/10mountains10years or

http://10mountains10years.blogspot.com/

For the Michael J. Fox Foundations for Parkinson’s Research.

P.O. Box 4777 New York, NY 10163

(212) 509-0995 ext. 204

 

http://www.michaeljfox.org

 

 

and for Team Fox visit www.TeamFox.org

Donations to the Alzheimer’s Association & the Michael J. Fox Foundation in honor of the

Regulars “10 Mountains – 10 Years (A Quest for the Cure)” project:

http://www.theRegulars.org

Once on the Regulars Website please click the page entitled “Donate Toward Research”

# # #
 

 

 

 

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If you’ve ever had a bladder infection (the common name for UTIs), then you know how very painful they can be.

If you haven’t, let me describe one for you:

Many times, you don’t realize right off what’s wrong.

You’re edgier than normal. You feel “different down there,” but you’re not sure. Then, you get the frequent urinating thing. Every two minutes.

It begins to be painful, sometimes there’s nothing to urinate but you feel ike you have to. I mean you have to like someone’s holding your foot and you’ve got to jump off a cliff.

You start drinking water like crazy thinking you can dilute it. You hear cranberry juice or pills help, so you run out and buy some and chug down a quart.

No matter what else you think you have to accomplish, you can’t.

You can’t think straight. There are no other thoughts but those of pain. Your lower abdomen aches. You wet your pants, you can’t help it, and you cry as you’re doing it.

You’re in absolute agony, and if you had a gun and could drive yourself to the pharmacy, you would hold it up—for meds. For relief. I’m not kidding.

Even after you get the meds, it takes hours, if not days. You can run a fever. You snap at everybody, if you can even answer them. You find yourself running your fingers through your hair over and over. You avoid everyone.

This is a bladder infection.

The medical world acts like it isn’t a big deal, but I swear, if you had to live this way, and live with this undiagnosed, you might kill someone. They act like the second you get antibiotics it instantaneously goes away. But the overuse of antibiotics carry a consequence, according to the AMA.

Doctors and nurses pooh-pooh you if you’re young.

They think you’re amorous, having too much sex. Wink, wink. While that can be one cause, it’s not the only cause.

Women suffer greatly from UTIs (more than men, in general) in part due to their anatomy—a short urethra. Yeah, blame us.

But I know there are other reasons. Nerves, for one. I always get a bladder infection when something big is about to happen—buying a house, passing a big test. And yes, I’m amorous (and monogamous). That’s a good thing.

UTIs are also serious and can be life threatening if left untreated.

But what would a UTI be like if you couldn’t communicate?

If you had ALS or Alzheimer’s, or some other impairment that kept you from realizing exactly what was going on? What if you didn’t want to tell your daughter, or your nurse that you wet yourself again and again? Would you be shamed? Who wants to change multiple sheets or panties?

Urinary tract infections in the elderly are very, very common.

Particularly in women, and even more so for those who live in a care facility.

And they often go untreated.

Why?

Too many to care for, perhaps. The elder’s inability to describe what’s happening.

UTIs in the elderly or in people with Alzheimer’s can affect not only their health, but can also lead to significant behavioral changes. In fact, if your loved one’s behavior has changed recently, even if they’re male, you should consider the possibility that they could have a UTI.

Just as with me, agitation or nervousness is a big indicator.

The person is concentrating to deal with the pain—there’s nothing left for niceties. Check to see if they’re running a low grade fever, if they’ve soiled their underwear, if they’re more disoriented than usual.  

Elders with Alzheimer’s or Parkinson’s, or other neurological disorders may not remember to urinate—even their bodies and muscles begin to forget, to give off the proper signals, and this leads to a tract infection.

 

Those who have diabetes are also having a higher risk of a UTI because of changes in the immune system. Any disorder that suppresses the immune system raises the risk of a urinary infection.

 

If your male elder has an enlarged prostrate, that can impede urinary flow and cause an infection. So can a kidney stone.

 

People who are catheterized or have tubes placed into the bladder are more prone to urinary tract infection. (This is the highest group of all)

 

Caregivers, You Need to Know the Most Common Urinary Tract Infection Indications:

·       Frequent urination along with the feeling of having to urinate even though there may be very little urine to pass.

·       Nocturia: Need to urinate during the night.

·       Urethritis: Discomfort or pain at the urethral meatus or a burning sensation throughout the urethra with urination (dysuria).

·       Pain in the midline suprapubic region also known as flank pain and is also associated with kidney infections.

·       Pyuria: Pus in the urine or discharge from the urethra.

·       Hematuria: Blood in urine.

·       Pyrexia: Mild fever

·       Cloudy and foul-smelling urine

·       Increased confusion and associated falls are common for elderly patients with UTI.

·       Some urinary tract infections are asymptomatic and difficult to detect.

·       Protein found in the urine.

·        

Kidney Infection Indications:

*                All of the above symptoms plus:  

·       Emesis: Vomiting.

·        Back, side (flank) or groin pain.

·       Abdominal pain or pressure.

·       Shaking chills and high spiking fever.

·       Night sweats.

·       Extreme fatigue.

 

Testing for UTIs is usually a mid-flow urine test, and trust me, that can difficult in and of itself when dealing with an elder loved one.

The treatment for UTIs is antibiotics, but antibiotics have become overused and may not always be effective. Be sure to retest. Elderly individuals, both men and women, are more likely to harbor bacteria in their genitourinary system at any time, which means it just comes with old(er) age.

 

Care facilities are a medical necessity in many families lives for many reasons, but there is a higher incidence in care homes for UTIs. If you can care for your loved one at home for as long as possible and utilize the many community resources available to you—and keep your elder on a consistent routine, your elder is better off.

 

 

But I know how hard this is. I cared for my mother at home for the last three years of her life, and I do know there comes a time when you can’t do any more than you’ve already done.

 

By at least being aware of UTIs and how they present themselves, you can keep your loved one from suffering from this very painful and frustrating ailment.

 

Don’t let your elder suffer in silence.

 

~Carol D. O’Dell is the 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

www.kunati.com Publisher

 

 

Helpful Websites:

Alzheimer’s TreatmentsLatest news on drugs and treatment- from the Alzheimer’s Association.www.alz.org/treat

Alzheimer’s StagesUnderstand The Stages Of Alzheimers See Our Alzheimer’s Stages Site.Understanding-AlzheimersDisease.com

Alzheimers Nutrition TipsStrategies for Managing Mealtime Family Caregiving Advice & CDswww.LightBridgeHealthcare.com

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One of the biggest issues I had as a caregiver was no energy!

I knew I was doing a lot, caring for my mom (She had Parkinson’s and Alzheimer’s and lived with us)  and raising three daughters, but I still felt like most of my work was at home, not terribly hard or fast-paced, so why did I  always feel as if I was swimming in peanut butter?

I had such big plans. I thought since I was basically under house arrest, I’d spring clean, write more, paint a room, take a French course on the Internet. Caregiving wasn’t going to defeat me!

Nada.

I couldn’t make myself do anything. My body and my mind had gone to mush. Each day was a monotony of pills, food trays, doctor appointments, laundry and dinner…the nights were roller-coaster as mother’s sundowning made her more alert and agitated as the night wore on.

I was caring for a lot of people, yes, but when I began to observe what was draining my energy, it was less physically related than I initially suspected.

5 Caregiving Energy Zappers

  1. Lack of sleep.
  2. Worry and Regret
  3. Control Issues/Boundary Issues
  4. Holding on too long/not letting go

Lack of sleep is obvious, and the most physical of the 5 zappers. It’s also perhaps the most detrimental effect of caregiving. You have to realize that interrupted sleep is even harder on your body. You walk in a zombie state. You eat more to compensate, you can’t concentrate. We know that lack of sleep effects job perfornance, driving (even more than alcohol some argue), and your overall health and how it can contribute to obesity.The lack of sleep, compounded with the enormous challenges and responsibilities of caregiving creates a recipe for disaster.

What to do?

Tough one. Not all caregivers have the option or want to place their loved one in a facility.

Couple of options: Do you have a friend or neighbor or relative who lives nearby that you could go and sleep in a guest bedroom once or twice a month? You need to be OUT of your house, so your body doesn’t have all those cues to wake up. Even if your spouse of someone is willing to take care of your mom/dad/loved one, it’ll still wake you. Go somewhere else. Even a night at the Motel 8 is a good use of your money. Trust me on this one.

Second option: call you local council on aging and find out about respite services in your area. Or call a large church and ask for an adult sitter–or take your loved one to an adult day care. Insist they go. If they’re pouty, oh well. You have to take care of your health. You have to nap. You have to sleep! Without sleep, your body doesn’t repair itself. You could have a car accident, give your loved one the wrong dosage. You have to address this. Sleep deprivation is a serious problem that leads to many other problems.

Worry and regret: These are two hound dogs that won’t give up. They bullies and they’ll taunt you, pick at you, needle at you until you do what you have to do to all bullies, bears, lions and tigers.

How to face your inner bullies:

Stop running. Turn around. Take a deep breath.

PUFF UP. That’s what they tell you if you’re in the woods and are attacked by a bear.

Yell, bang pots, scream NO! Throw your arms around appear big and large and menacing and prove to that bully (and yourself) that you’re not running any more.

Worry is looking forward, living in fear of a future that isn’t even here yet. What if…?

Regret is looking back, beating yourself up for what’s already done. Why did I?

Both are not living in the present.

I just finished Eckhart Tolle’s book, The New EarthOprah’s bookclub pick. Get it on CD (his voice is about as flat as Stephen Hawking’s voice synthesizer, but the book’s so heady, it’s easier to listen to than read) His insights into living in this present moment, and why that brings peace, purpose and joy was refreshing really rang deep within my bones.

Worry and regret are just borrowing trouble, and trouble multiplies. They will eat at your mind, your heart and your life and will never stop. There’s always something to worry about, always something to regret.

What to do? Again, stop,  turn around, face this bully and say “NO.”

I suggest wearing one of those wrist bands (one of those rubber band/bracelet things). and every time you start to worry or regret, snap it real hard. Say out loud, STOP. Choose a good thought to replace it with. Have 2-3 fall back thoughts to replace the negative ones with–or put on music but stop the cycle.

Control Issues/ Boundary issues: You’re either one way or the other. You have to control everything–or you dont’ know how to say no.

It comes with the territory, and let’s face it, caregivers are bossy. Either by nature or by default, we’re used to running things. We know how mom likes her eggs, how to get her to take her pills, how we like the bed made, and on and on…. We don’t ask for help because we want things done our way.

Caregivers are all people pleasers. We like being needed, but the problem is, it mounts and mounts, and we simply can’t do it all. Stage left, in comes worry and regret. We need help, We need to give up our perfectionism and realize that we don’t always have to be busy–control thrives off of busyness, and after a while, caregivers forget how to do anything other than care give! We sit in front of the tv with our families and feel we should fold laundry, make next week’s list. We don’t know how to just relax any more because we’re in uber-mode.

How to stop? Breathe. One deep breath at at time. Ask for help, and then tell yourself that no one has to do it your way. Find small 5 minute relaxers–a bath, a walk, and try not to think ahead, plan, or organize your thoughts. Just be. Each time you feel your nerves building. Stop, Breathe. Fill every ounce of your lungs. Do it three times. The world can wait. Breathing is a great stress reducer.

Grieving: Those of us who have a loved one with a “life limiting illness or disease” as hospice says, knows that our time with our loved one is running out. Alzheimer’s, ALS, Lewy Body can take our loved one from us long before they leave this earth. We still have all the physical care, but without the reward of the relationship with our loved one. They might not know who we are, might not be appreciative or even be capable of talking.

We’re already grieving. Our hearts ache, and yet we have to keep on. Grieving is hard, necessary work, but it’s still work and it takes an enormous amount of energy to grieve.

If this is where you are in your life, first, recognize it.

Second, be easy on yourself. 

No wonder you don’t have energy. Just get through. Grieve as only you can. Does that mean sleeping, flipping channels? crying? Do whatever you can to get through.

Look for ways to soothe your soul–journal, pray or meditate, go out in nature and just sit. Talk if that helps, or be silent. This is a part of the process and we have to honor grief. When we do, when we don’t fight it but let it naturally occur, then it’s healing and cathartic–and it doesn’t last forever. As hard as it is, trust that joy and energy will return.

Letting go: Holding up a cardboard box isn’t difficult, right? It’s not heavy, but stand there long enough and that cardboard box starts feeling like a boulder. Not letting go is the same way. You can’t get your mother back from Alzheimer’s. I’m sorry. I really am. But you can’t. You have to let go that she doesn’t know you. You can’t get an ex husband back who’s already married again. You can only move on with your life. You can’t regret you didn’t finish college. You can go now, but regretting the past is useless.

Holding on is subtle and can go undetected. We think we have. We don’t pay attention to the snippets of thoughts in our heads, that running dialogue. We don’t realize we’re holding hurts and grudges, that we want things to be the way they were even though we know that life has changed. We’ve changed.

When my nephew, Charles was about three years old, his mother came to the back door and offered him and his older sister a cupcake. Charles had a matchbox car in one hand, and a palmetto bug (big roach!) in the other. He looked at the cupcake, looked at his car, looked at the big, and couldn’t decide.

Then he popped the roach in his mouth and grabbed the cupcake!

Lesson here: Let go of the “cock roaches” in your life, and take the cupcake!

I ask you, what are you holding onto? What do you need to grieve? What are you going to have to let go of and then hold out your empty hands and trust that something or someone new will come into your life. I can’t promise that you’re not going to have to sit with that void for awhile, and that’s what we’re all afraid of–but I can promise you this:

Until you let go, you’re hindering all the good out there that’s waiting to come into your life.

Energy zappers keep us from our joy and purpose. They make us exhausted, grumpy and lost in a fog.

By identifying our nemesis, our energy zapper–we can stop, turn, look at it for what it is, and make better choices.

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

www.kunati.com

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I remember that day well. The day I knew I couldn’t keep on caregiving like I was–not full-time, 24/7, in our home.

It wasn’t about being exhausted to the bone, frustrated to the point I had gritted my teeth down to the nubs, or numb due to months of interrupted and little sleep.

It wasn’t about me. Or Alzheimer’s. Or the end stages of Parkinson’s.

My breaking point was about my daughter.

I wrote in Mothering Mother:

I didn’t expect it—not today—the day I would decide I couldn’t take care of Mother anymore. It’s not really about how hard it is to care for her, but then again, maybe it is.

I should have known that in the end the deciding factor would not be when I had had enough, but when my family had had enough.

Cherish, our youngest daughter is in the hospital. She has a severe kidney infection.

It started out with a backache that lasted for a couple of weeks, and then last night she came down with flu-like symptoms, only something was different about it. My mothering instinct kicked in, and I told Phillip I had to take her to the emergency room.

She was admitted, and for the first time, I found myself in the children’s wing of the hospital, the walls decorated with brightly colored tropical fish murals, and a friendly, concerned staff.

I spent day and night beside her, getting washcloths, holding back her hair and wondering how she had gotten so sick and I didn’t know it. I’ve spent every lucid moment taking care of my mother. My own child needed me and I didn’t pick up on it.

 

Cherish’s medications worked and we barely avoided surgery, but they told us one kidney was smaller than the other and we would have to continue to monitor the situation. She spent five days slowly improving. My mother-in-law flew in to take care of my mother, which was a godsend. 

On the day we were told we could leave, the doctor did a final exam. She asked Cherish, “Who’s your best friend?” and “What do you like to do for fun?”

Cherish’s answers were polite, but lacked enthusiasm. I wondered how I’d answer the same questions. Our life had become as bland and monotonous as a bowl of oatmeal.

The doctor asked what home was like and Cherish explained how her grandmother lived with us. She said it was hard. 

I sat there, stunned, not ever having fully realized the impact of Mother’s care on my children’s lives.

 

“Is your grandmother’s care too much for you or your mom?” the doctor asked and I felt sick inside. How did we get here? How did it ever come to this?

Cherish’s timid nod yes was followed with tears and quivering lips.

 

It all fell away. The illusion that we were all coping was over. I admitted to myself, perhaps for the first time, that this was too much.

 

I had no right to put my family through this. What had started our as love and loyalty had morphed into something unhealthy. I was no longer sure I was taking good care of anyone, including my mother.

I had to accept that my Mother’s bizarre behavior (Alzheimer’s) is no different than living with the mentally ill in practical terms. Its origin may be different, but no one would or should subject a child to this.

My children had endured a worn-out mother, a bickering, beligerent grandmother who inflicts constant verbal attacks, and the loss of the freedom just to be a teenager. This child had taken the brunt.

Everything I’ve believed in is on shaky ground.

 

I don’t know what I’m supposed to do now. I just know I can’t keep doing this.

I’ve been home a few days from the hospital; I pick up Mother’s wallet, get out her insurance card and dial the number. Within fifteen minutes I’m talking to someone who suggests possibilities.

Why haven’t I thought of this before?  What keeps me locked in the I-have-to-do-this mind-set?  Guilt?  Loyalty?  A promise Mother asked of a child?

I no longer feel obligated to do this no matter what. The no matter what is my family. I’ve done the best I can.

 

After hours hours and hours over the last several days on the phone—time I don’t have to waste—and I’m back to nowhere. The cost for nursing care is astronomical. Mother’s conditions are not considered a “skilled-nurse necessity” and therefore Mother’s insurance doesn’t cover her. I’m stuck between paying out thousands a month for who knows how long, or piecing the care together as I’ve been doing while carrying the main load myself. So much for help.

 I basically spent a week fooling myself, thinking that I could find Mother decent care without bankrupting us. So far, I haven’t found it. Mother’s been with us twenty months and I’ve done all that I know to do. It feels like it’s time to let go, but I don’t know where to turn.

*****

I don’t know if you’re at your breaking point.

If you’re not, you may be one day.

It will be about your own family dynamics, or perhaps your marriage or your health. Most disease such as Alzheimer’s, Parkinson’s, cancer, ALS, all offer ring side seats to a very long and heartbreaking situation.

I wish I didn’t have to share this with you.

I wish I could clean it up and offer you something cool to drink.

I wish we didn’t have to talk about this, and yes, your loved one might slip out quietly and peacefully in the middle of the night. I wish, pray, and hope that for you.

 

But I’d rather share my story, offer a few insights, and reassure you that while yes, it will be really, really hard–you will make it.

My story doesn’t end here. My daughter is healthy today. We’ve managed to avoid surgery a few more times.

My mother’s passing was at home and peaceful, but it was slow, and I have to tell you these things because who else but a fellow caregiver will be this candid?

 

Sandwich generation-ers aren’t people just under a catchy umbrella. Their concerns aren’t just how to get little Jimmy to soccer practice–many of them face gut-wrenching choices.

I can also tell you that I believe my children are grateful for the experience of living with my mother, and while aspects of it were really hard, they gleaned a lot, learned a lot about themselves and what it means to be a family.

Did I pray? Turn to God for help? I think I did, although I was in full crisis mode, and I didn’t have the sense to make a formal plea. Nor do I think we need to. A desperate prayer occurs instantly.

Did I have faith? I’m not sure I had much of anything, and I can’t see a divine loving being holding that against a worn-out caregiver. We think we have to jump through hoops–do it right, say it right. I don’t think so. I’m just grateful our lungs are on auto-pilot because in times of great stress, I’m sure I’d forget to breath in and out.

Did I let some things go on too long? Should I have done some things differently? Perhaps. I’m not one to wallow in regrets. I accept what was and learn from it.

May you have the hindsight to know where you’ve been, The foresight to know where you are going, And the insight to know when you have gone too far

An Irish Blessing

Where are you? Does this post hit you hard and deep? Does it scare you? Infuriate you? What is it that shakes you to your core?

If you’re at your breaking point, my advice is to go ahead and break. Let it fall apart. You’ve done all you can. You’ve loved, and given, and worked, and hoped, and now it’s time to let go. Trust. Trust something will happen, something or someone will help.

Call someone. Alzheimer’s (www.alz.org) has a toll free number. Call–pour your heart out. Ask for help. Tell others that this is it. You can’t do any more.

Trust that help will come.

~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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Most people would tell you they’d much rather be a caregiver than a care receiver.

And as much as I whine, gripe, complain, and mope about caregiving, I too, wouldn’t volunteer to sign on the care receiving dotted line, and I do know that there will be a day when I will need to relinquish my car keys, ask for assistance in and out of a chair, accept that someone might need to help me change or bathe me or stay up all night at the hospital with me–and that I need to choose now to accept this part of my life with dignity and grace.

Easier said.

As much “air time” as caregivers get for being under stress and juggling all of their responsibilities, the care receiver has little to say.

Why? Mostly because they are the ones who have to deal with the pain, challenges and incapacity brought on by illnesses. They don’t have the energy to hang on the computer because all their energy goes into fighting pain, depression, or it might go to the ever sucking mind meld of Alzheimer’s.  

The few care receivers/partners who manage to blog offer their insights for the rest of us and are amazing individuals who give us to peek into their world and catch a glimpse of what they face–from the pain to the sorrow, to the humor and love and relationships they hold dear.

Some of my favorite blogs are by those who face Parkinson’sor ALS or dementia or cancer and capture their thoughts, fears, moments of tender joy for the rest of us. 

Kate Kelsall’s Shake, Rattle, and Roll is an excellent example of a thoughtful, hope-filled blog about her challenges with Parkinson’s and her extraordinary life.

Most people would rather be a caregiver–even with the nights, weekends, doctor visits, orange vinyl hospital chairs, and back straining duties–they’d still rather be the one to give.

But life keeps on and sooner or later, we will age, our bodies will break down, and we will find ourselves…in need.

So many people don’t want to need anyone any more. They thnk that if they have enough money they won’t be a burden to their family–they’d rather have a stranger bathe them than a daughter. They don’t want to inconvenience anyone, and while I do understand that to some degree, I also want families to know that needing is a good thing. Our babies need us, our children need us, my husband needs my support–wants it yes, but also, he needs me.

Too much needing is not healthy, I know that firsthand but families needing each other isn’t all bad either–and it doesn’t mean you can’t supplement care. Needing someone to be a part of your life is what connects us.

Have you ever met a person so together that they were either intimidating or boring? Everything was perfect and they had no struggles, no hardships, and therefore, you had nothing in common–nothing to work through or talk about?

As we grow older or are faced with an illness, we can’t say to the world, “No thank you, I think I’ll pass on the care you’re offering me.”

I know that as a caregiver to my mother who had Parkinson’s and Alzheimer’s that I’ve learned many valuable lessons:

  • Tto be patient, forgiving, to stand up for ourselves and those we love
  • To strive for balance, to say our words of love now
  • To see beauty in the smallest of moments
  • To be astonished at how stubborn, tenacious, and strong I can actually be under extreme pressure. 
  • To see my own weaknesses and things I needed to work on–lots of things to work on.

If we learned have somuch to learn from caregiving, do we not think that care receiving might

teach us a few things as well?

As a care receiver, I become the life lesson for others. I submit to be a part of the bigger picture.

I agree to become the white nouse in the lab of life–here, learn off of me, practice patience on me, try and fail and try again to forgive–on me. I will allow my body, my inadequcies, my vulnerabilities to be used by others to teach strength and gratitude, and I know full well there’s no easy way to learn these things. And I’ll be willing to participate in this grand human experience while I’m fighting pain, facing impending death (or transformation depending on how you look at it) and even the possible void of the forgetting.

I agree. Sign on the dotted line.

Whew! It’s even scary to write those words, to agree to this in theory. Yet so many phenomenal people have had no choice. They relinquish their pride and indepence in order for us to learn to love.

That’s what it really boils down to–that’s the essence.

I will allow my pain and sorrow and illness to teach others how to love.

I don’t know about you, but I’ve got a lot left to learn. Learning how to receive is infinately harder to learn than how to give.

 ~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 isn’t exactly synonymous with a spicy love life–not until now. Maybe a passionate love life is just what the doctor ordered…

 

Dr. Christine Northrup, Oprah’s gynecologist on speed dial and author of Women’s Bodies, Women’s Wisdom, and the Wisdom of Menopause suggests that you spend 30 minutes three time a week in “self love.”

(Yes, that’s right. We’re talking about the M word)

Now, I can only speak for myself here, but unless “self love” includes eating a bag of Dove chocolates, painting my toenails and thumbing through a magazine, I’m going to have about 27 minutes to kill.

 

It’s not like I have to woo myself or assure myself that I’ll respect me in the morning…

 

As a caregiver, mother, daughter, sandwich generationer, pet “mom,” I have to tell you, thirty uninterrupted minutes is hard to come by.
(pah dum,dum)

 

I figure I can blog about this if Oprah can discuss it at 4:00 in the afternoon while I’m making chicken pot pie.

Besides, a healthy love life is important–and most of us would rather “play with others,” so let’s take the leap.

 

Why bother? You haven’t got time? You have no drive?

You’re beyond exhausted? You’ll deal with “that” later?

 

Here’s why it’s crucial: 

 

Being a passionate person spills over into everything in your life–how you dress, walk, what you choose to eat, how generous you are with your time and energies, how affectionate you are to all living creatures–not to mention the effects giving and receiving love has on your heart, immune system, psychological, emotional and spiritual foundation.

 

Here’s a few tips for revving up the ole’ love life for couples who are also caregivers, raise kids, and walk dogs. Believe me, I’ve been there–forty pounds heavier than I am today–sleep deprived, irritable, and pulled in a thousand directions–and living with a loved one with Alzheimer’s isn’t exactly conducive to candles and teddys.

 

Mom’s Home—Quick, Lock the Bedroom Door!Enjoy Your Relationship Even if Your Mom

Lives With You

· Put a lock on your bedroom door—and use it
· Sneak around—intimacy doesn’t just have to happen in the bedroom. Be playful! Flirt!
· Nix the old t-shirt and sweats and wear attractive PJs—they don’t have to be overly sexy to be attractive.
· Stay affectionate–even if you have to make yourself at first—call each other during the day just for a “Hi, and I love you,” hug and kiss hello and goodbye, cuddle on the couch, call each other affectionate names/ take baths or showers together (you do remember those?)
. Take short walks together—even 5 or 10 minutes of fresh air is invigorating and gives you a chance to talk
· Plan a surprise—sneak out to the yard after dark to cuddle on a quilt under the stars with cups of hot chocolate
. Laugh! Rent a comedy, pop some popcorn and sit ont the couch together–not in dueling recliners
· Don’t sweat it if you aren’t in a lovey-dove mood–caregiving is stressful and there are seasons in life. Remember though, a healthy love life is healing, satisfying and stress relieving—and better for you than a bottle of Scotch

  • If you’re a care partner, you have also face physical challenges. Talk, cuddle, find out what works and what doesn’t. Don’t think you have to “go all the way.” Find your own way.

Being a caregiver, care receiver, or care partner doesn’t mean you–or your loved one is dead. Unearthing those needs and desires means you’re still alive. Love and passion are vital.

Say “yes” to LIFE every chance you get.

And don’t forget–holding hands is still pretty darn great.

Happy V Day!

~Carol D. O’Dell
Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir,
available on Amazon
and in most bookstores

Kunati Publishing

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