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Archive for the ‘healthcare’ Category

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

How to Choose a Care  Facility For a Loved One:

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

~Carol O’Dell

Author of Mothering Mother, available on Kindle

Other great care facility information can be found at:

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

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I’m heading to France this summer and I’m taking a small photo of my dad standing in front of the Eiffel Tower during World War II. This Memorial Day we honor those who have served in war. We remember what they did. How they defended us. How they stood up for the helpless, the defeated. And now, many who have fought for our country are our elders. Their bodies are failing–and it’s our job to care for them and to give them the honor they deserve. Caregiving is more than meeting someone’s physical needs. It’s about remembering–all they are and have ever been.

Our fathers and grandfathers, brothers and mothers helped to stop Hitler–among others intent on destroying life. That’s amazing–and there are still atrocities going on in the world. People are still not free, and as flawed as we are, we still stand for justice. Maybe our government has mixed motives, but the men and women who serve in our Armed Forces have some pretty high ideals. We don’t want tyrants to take over, to kill and destroy, to obliterate the simple opportunity to live and work, marry and have families, eat and make a life for themselves and those they love.

So this weekend, look someone who has served our country right in the eye–and say thank you.

Ask them what it was like–to be “over there,” to be scared, to liberate a country, to ride in a tank. Give them the chance to tell their stories. Give them the opportunity to talk about it, for their chest to fill with pride. For them to relive their glory days. Get out those albums. Hang a flag. We’re far less patriotic than previous generations, and yet we are the ones reeping the benefits of their valiant efforts. Forget politics. Thank the men and women who protect us–who gave their time and for many, their limbs for something bigger than themselves.

I’m taking that photo of my dad to Paris with me. He was a sharpshooter and he helped to liberate France and Germany. He fought at the Battle of the Bulge. He stayed two more years to rebuild Paris. He absolutely loved serving our country–and now, he’s gone–but I won’t forget. I’ll tell his stories. I’ll visit Paris and Normandy. I’ll wear his dog tags.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

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All of us worry about aging. Perhaps we should worry less–and learn from a pro. So, who’s the oldest person who ever lived?

The oldest woman (that can be documented) is Jeanne Louise Calment. She lived to the age of 122.

Born in Arles, France, February 21, 1875, and left this earth on August 4, 1997. Now, that’s impressive–but what’ more impressive is her mindset, her ability to embrace challenges and change. If anything is the key to longevity–with quality–it’s embracing challenges and changes with a measure of wit and grace.

What attributes do you need to live a long, healthy, and meaningful life? Living past 100 isn’t just about longevity–it’s about quality. Being a caregiver, I got to see “old age” close up. My mom lived to the age of 92 and it was only the last two years that were extremely difficult. ( My mom had Parkinson’s, Alzheimer’s and heart disease). There isn’t always rhyme or reason why one person makes it well past 100 with a sharp mind and a spry body while another person seems to hit one health problem after another.

Many centenarians have eaten what they wanted, smoked, drank (usually in moderation)–while someone else who tries to follow all the rules finds a not so pleasant diagnosis. Life isn’t fair. That’s a mantra we must embrace–and not in a negative way–but by choosing to love what is kind of way, and knowing the only thing we can change is our attitude.  Life’s a crap shoot, so let’s play some craps.

Highlights of Jeanne’s Louise Calment’s Amazing Life:

  •  Born the year Tolstoy published Anna Karennina
  • Born one year after Alexander Graham Bell invented the telephone.
  • She met Vincent Van Gogh in Arles, her home town, when she was just 14. She wasn’t impressed.
  • In the end Calment was blind and almost deaf, but she kept her spunk and sharp wit to the end.
  • At age 121, she released her two CDs, one in French and another in English titled, Maitresse du Temps (Time’s Mistress). the CD features a rap and other songs. She wrote or contributed to five books.
  • Her husband died of a dessert tainted with spoiled cherries–she was a widow for more than half a century.
  • She outlived her only daughter who died of pneumonia at the age of 36. She raised her grandson who became a medical doctor and  lived him as well (he died in a car accident in 1963).
  • Calment took up fencing at the age of 80, and rode her bike until 100.
  • Calment enjoyed port wine and a diet rich in olive oil–and chocolate–two pounds a day.
  • At the age of 119 she finally agreed to give up sweets and smoking–because she could no longer see to light up.
  • Calment enjoyed a life of relative ease–from a bourgeois family, she always had enough money–not wealthy mind you, but enough.
  • She was active–and enjoyed tennis, bicycling, swimming, roller skating, piano and even opera. In her later years she sold some of her real estate and lived comfortably in a nursing home in Arles until her passing. She was affectionately known in France as “Jeanne D’Arles.”

Calment’s attitude and longevity s attributed to her decision not to worry: “She never did anything special to stay in good health,” said French researcher Jean-Marie Robine.  She once said “ If  you can’t do anything about it, don’t worry about it.”
Calment recommended laughter as a recipe for longevity and jokes that “God must have forgotten about me.” ( L’Oubliee de Dieu?) as her reason for her long life.

For skin care, she recommended olive oil and a dab of make-up.  “All my life I’ve put olive oil on my skin and then just a puff of powder.  I could never wear mascara, I cried too often when I laughed.”

Calment’s Quotes:

“I’ve waited 110 years to be famous, I count on taking advantage of it,” she quipped at her 120th birthday party.

Also on her 120th  birthday, when asked what kind of  future did she expect, she replied “A very short one.”

Getting used to growing media attention with every year that passes, she quips:  “I wait for death… and journalists.”

“When you’re 117, you see if you remember everything!”   She rebuked an interviewer once.

On her 120th birthday, a man in town said, “Until next year, perhaps.”

“I don’t see why not,” she replied. ” You don’t look so bad to me.”

Clement’s Best Quote:

“I’ve never had but one wrinkle, and I’m sitting on it.”

I don’t know about you, but aging like this doesn’t sound too bad. It sounds like a good life.

Enjoy life, learn to let go–even of those you love, crack a good joke, eat what you love, and don’t worry about the rest.

***

Mothering Mother is now available as an e-book! (click here to order for your Kindle)

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After a decade of caring for my mother who had Parkinson’s, Alzheimer’s and heart disease, then brought her into our home the last 2+ years of her life, this is the distilled version of what caregiving taught me. I am profoundly grateful for these lessons.

  1. To stand up for myself, and caregiving will give me plenty of opportunities to do so.
  2. There is a time in life in which you sacrifice for someone you love–and a time to stop sacrificing.  
  3. It takes humor to tackle the big scary things in life, like caregiving, disease, and death.
  4. Caregiving will inevitably bring out the worst–and the best in me.
  5. Caregiving will change me, but it’s up to me to determine how.
  6. I can’t stop death.
  7. I can decide how I will live the next moment of my life. One moment at a time.
  8. My emotions are my body’s barometers. I need to listen to these cues, feel them, use them as a catalyst, but know that no one emotion will last forever.
  9. To pace myself. Burnout is very real and very dangerous.
  10. I can’t meet all the needs of another human being. I can’t take the place of my care partner’s spouse, career, friends, or health.
  11. Caregiving is about integrity. I have to choose what is right–for me–and for all the others in my life. No one person gets to be the “only one ” 
  12. When I start to give too much to caregiving, it means I’m avoiding some aspect of my own life’s journey.
  13. Caregiving  isn’t just about caregiving. It unearths every emotional weak spot I have–not to destroy me–but to give me a chance to look at, and even heal that area.
  14. I have to stop being nice and pleasing people. “They” will never be satisfied or think it’s enough. What’s best for me–truly, deeply best–is best for those around me.
  15. Learning to stand up to relatives, authority figures, to my parent or spouse, and even a disease teaches me to be brave, a quality we need.
  16. Give up perfect. Go for decent. Do more of what I’m good at–and ask for help on the rest.
  17. Don’t isolate myself. Being alone, depressed, and negative is easy. Fighting to stay in the game of life–that’s tough, but worth it.
  18. If or when my care partner needs more care than I can provide, or even dies, that doesn’t mean I’ve failed. It means I’ve done all I could and it’s time for change.
  19. You will go the distance. You will live at hospitals, stay up night after night, weep in the deepest part of your soul, question everything you’re doing…and barely come out alive. Caregiving asks, takes this from you. Through this process, you will transform. You will see who you are–the whole of you. You will survive.
  20. Choose to care-give–then do with heart and guts.

To love makes us brave. To be loved gives us courage.

                                                                                                                                       –Lao Tzo, Chinese Philosopher

Carol O’Dell

Author of Mothering Mother

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Dr. Christiane Northrup did a PBS talk on the Wisdom of Menopause in which she reminds me that nothing–not caregiving–not menopause is brought into my life to destroy me. It’s to make me pay attention. To love and accept myself more–not less. Over-caregiving is more common than you think. I’m guilty of it myself–at times. I had to learn that I couldn’t fix my mother–I couldn’t take the place of her beloved husband after Daddy died. I couldn’t stop Alzheimer’s. I couldn’t be her all in all. And I had to stop trying.

Dr. Northrup used the excellent model of breastfeeding to correlate how we should care-give. Being a young mother is another time of extreme care. We physically and emotionally give our all to birth a new life. In order to breast feed, you have to feed yourself. You use up 600-1000 calories a day breastfeeding. What you eat, how you sleep, how stressed you are–all effects your ability to produce milk. If you go for even a few days without eating healthy and sleeping well, your milk production will begin to wane. What a great example. You can’t give out, unless you give in. Your body–and your spirit just won’t do it.

She also mentioned that a doctor friend of hers wrote on his prescription pad to a woman “See your mother ONLY 2 times a week.” Doctor’s orders. Sometimes we need others in authority to give us permission to take better care of ourselves.

I remember one day when my mother shuffled into my kitchen with a scowl on face. She slammed her hand down on the counter and announced,

“I”m not happy!”

She had a “and what are you gonna do about it look on her face.”

I started to smile. Revelation.

I realized in that moment that the only person I could make happy–was me.

We can never fill up another human being. We can’t make up for aging and disease–or for their lack of caring for their lives and health all along. Our best way to give is to know what ways ive best.

How do you know when you’re over-caregiving?

When you have zero time for your own health and relationships. But, but…you argue. If you are getting less than 6 hours sleep, are spending all your time taking care of someone else’s physical and emotional needs, feel like your stress levels are above an 8 almost all the time, then yes, you’re over-caregiving.

How to stop over-caregiving?

Care-give  ala’ carte style. Pick and choose and don’t even try to do it all.

What are you good at?

What does your mom–or dad–or spouse value?

What seems to be working?

What isn’t working?

So, if you’re a great cook and they eat for you, then cook and fill their tummies with homemade soup and decadent brownies.

If they like for you to be at their doctor’s appointments, then build that into your schedule.

If you tend to fight every time you start trying to organize their house–then quit.

But I dont’ have a choice. If I don’t do it, it won’t get done.

Then it won’t get done. Be willing to live with it.

For example, I stopped going to re-check appointments. My mom had Parkinson’s and Alzheimer’s, as well as heart disease. I took her in for her six month check-ups, but no follow-ups. I got her meds and created a structure we could live with. I dealt as best as I could with the emergencies that came up.

I also said no to hospitalizations. They wanted to try exploratory surgery. Really? On a 90 year old with all these conditions? I said no. The medical profession looked at me as if I were a bad daughter, but I didn’t care.

Ask yourself: Does it need to get done? Will it improve the quality of life enough to warrant the work/commitment?

Yeah, some things do. But do the minimum in the area you’re not good at or don’t think it will pay off. Or ask someone to help.

If you have to choose–choose to meet your needs first.

What?

Yep, that’s what I said.

You can’t reverse Alzheimer’s once it’s started.

But you can prevent heart disease (the number one killer in the US) in your own heart!. Go for a walk. De-process food your house. Sign up for yoga. Rent all your favorite funny movies and invite a friend over for a laugh fest.

Sounds too simple? It’s because it is simple. Choose health CARE over health-care. Do what you can, but know that you can’t undo another person’s diseases or problems. Love them, make life comfortable, and give up over-caregiving.

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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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“You want to see my new girlfriend?” My friend’s husband teased his wife one day as I was visiting her in the hospital. He is her caregiver, her husband, her lover, her muse and mentor  of 40 years, and her illness had put a real strain on their relationship. 

He pulls out his wallet, takes out a picture and shows it to her. I can tell it’s a joke because he’s grinning from ear-to-ear. She breaks out in laughter despite her pain. They show me the picture.

It was a picture he had taken of his hand!

My friend was in the hospital–that time for close to three weeks. She has a chronic disease that has attacked her intestines. Her husband had sold his business and they had rearranged their life to accommodate this hostile addition to their family–illness.

Both of them had visions of their golden years–traveling in their RV, grandchildren, financial security, and lots and lots of leisure and fun. Hospitals, drugs, and pain was not what either had in mind.

To say that their sex life diminished is an understatement.

To say that sex doesn’t matter in the face of disease and pain is to not look at the whole situation. Sex does matter. It’s the one thing couples do together that they don’t “do” with anyone else. It’s a glue, a bond, a secret language, a healer of life’s wounds…to simply and biologically state it, sex is a needed release.

More magazine has an interesting article in September 09’s issue on this very subject. They state that 75% of all marriages that are dealing with chronic illness long-term end in divorce.

These aren’t shallow people. This isn’t Jon and Kate splashing their news on the headlines (not that they’re shallow, marriage is tough and I hurt for them and their children). These are quiet, hard working, family oriented people who  face surmounting, mind-boggling stress, heartbreak, financial ruin, unbelievable and unrelenting pain. And the one thing that can combat all this–their marriage and the healing powers of sex and intimacy–are taken from them.

How do couples get through caregiving and the strains it places on their marriage?

I observed my couple friends and this is what I’ve gathered.

You readjust.

You let go of what you thought life would be.

You dig deep to find your integrity.

 You find joy in the smallest of things. You find purpose as a caregiver.

You use your anger not at each other like weapons of mass destruction, but together, to get things done, to let off steam, to keep from going crazy…and you turn that anger into humor–maybe a little sick and twisted–but it keeps it from turning toxic inside you.

You do what you have to do to get by–and it’s nobody’s business. How you define sex may be different than other couples, and how and when you’re intimate may not fit the national average.

You get strong and tough and tender and real all at the same time.

I have no big answers here. It’s too complex and too gritty to give you bullet points–as if you could fire them on target and make it all instantly go away. What I have gathered from my friends and others I’ve seen going through years of what illness can do to a relationship is that the ones that make it create this circle of energy around themselves. They are one.

Couples who face caregiving challenges together have come through the fire, and on the surface, no, life didn’t turn out like they thought it would–but in many ways, it’s better. I witnessed it in my parent’s marriage.  The unity, the simplicity, the bond they have, they earned. You can see it in their eyes, they familiar gestures of thoughtfulness, the resolve in their voice. They have something profound.

~Carol O’Dell

Author, Mothering Mother

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Will I get Alzheimer’s? Will you? Maybe we will if we live long enough.

Should you be worried? I don’t think so. Worry can kill, or at least bring on a host of diseases from mental illnesses such as anxiety disorders to insomnia to heart disease-and all these illnesses will kill you far sooner than Alzheimer’s is likely to show up. I was my mom’s daughter and eventual caregiver and her last years were spent in the grips of Alzheimer’s, but I can’t let that define her. My mother had a full, wonderful life–and this insipid disease cannot diminish the amazing woman she was.

A lot of people are asking themselves the “Big A” question. They’re especially concerned if their parent or sibling has dementia, Alzheimer’s or other types of memory disorder diseases. There are even tests to help you determine if you are a likely candidate. But most people aren’t getting tested, they’re just worrying.

Ironically, my mother’s situation with Alzheimer’s and Parkinson’s (even though it sounds crazy to say this because so many see this disease as off-the-charts scary) is that I’m no longer afraid of these two monsters. Why?

Because I’ve ripped off the curtain and seen for myself that the great and terrible Oz is just a little guy in a green suit with a booming voice, I don’t sit around and worry about getting any disease, much less Alzheimer’s. These two diseases didn’t take my mother from me (in some ways it did, but life/aging/death does anyway). I’m fortunate that my mother didn’t start showing symptoms of Alzheimer’s until her late 80s and it was only the last two years that were truly difficult. Even when it was terrible, and I do mean terrible, she was still my mother–something I had to learn to remember and cherish when she no longer could.

I do have to admit–I was adopted. You think that lets me off the hook, but you see, my birth mother had schizorphrenia–another brain related disease that’s really off-the-charts scary. My birth mother’s life (and in some ways mine) was destroyed by schizophrenia. She was in mental institutions much of her adult life, had to undergo many shock treatment therapies, and she couldn’t raise or even be around her children. I was eventually adopted and my mother died before I found my birth family.

Schizophrenia strikes somewhere between your teens and early 40s. I remember asking my daughter’s pediatrician how would I know if I were to become schizophrenic. “Oh, you won’t know…but everyone around you will.” That’s a lot like Alzheimer’s. The forgetfulness, the confusion, the delusions and excuses are all ignored, denied, or simply go unobserved–by the person experiencing them. It’s their co-workers, spouses and children who first begin to see the symptoms.

I finally made peace with the schizophrenia bully-monster who was lurking in the back of my thoughts. My life was significantly different than my birth mother’s. I was in a loving marriage, I took care of my health, and I was aware that it was a possibility–and I knew that there were much better treatments available today. Other than that, there was nothing I could do–just live a full, rich and healthy life–and trust for the best.

I feel the same way about Alzheimer’s. We’re so much more educated about our health. We know to watch our weight (whether we do or not is another issue) to exercise, use our brains, watch the vices such as alcohol and smoking…and I truly believe that we’ll begin to see medical advancements as well to curtail the current statistics.

Here’s the breakdown of those who will have Alzheimer’s from the National Center for Health Statistics for the average person from ages 50-90.

(From Today’s Senior)

If you
are now age
Your lifetime risk
is only
Odds that you
won’t get Alzheimers
50
55
60
4.4%
4.6%
4.8%
95.6%
95.4%
95.2%
65
70
75
5.1%
6.6%
8.9%
94.9%
93.4%
91.1%
80
85
90
10.6%
12.2%
17.9%
89.4%
87.8%
82.1%

I’ve given my family written permission that if I become seriously ill with Alzheimer’s or any other long-term chronic disease that completely strips me of my cognitive abilities, put me in a decent care home, visit and love on me often, but go and live your great big wonderful life…in my honor (if that makes you feel better about it).

My heart goes out to those who contract Alzheimer’s at a young age. Yes, it does seem totally unfair, a life cut short, and families placed under tremendous financial and emotional stress. For these circumstances, I pray for a cure. I’ve lived through and also witnessed the ravages of this disease. It’s not simple. It’s not easy, and even when I try to make the best of it, I know how isolated and scary it is to deal with Alzheimer’s in your family. Those who are caregiving a loved one with Alzheimer’s are under tremendous stress.

If you’re really in a knot over whether you’ll get Alzheimer’s, consider getting tested. Write your family a letter and share with them how you want to be cared for.Do some research and find good doctors or care assistance, and after you’ve done all you can do, try to let it go. Being proactive is all you can do. Don’t let what could happen tomorrow steal today.

For me, each day I try to make peace with my past–and my future at the same time. I refuse to worry about something that might–or might not happen. I’ve got too much living to do. I have a bucket list three miles long!

What’s coming tomorrow–or twenty years from now none of us can know. That’s why it’s so important to live in the now. Do good work. Live with purpose and passion. Make a difference in somebody’s life. Laugh and embrace right where you are. Today. It’s all any of us have.

~Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

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Tomorrow, I’ll be speaking with the Parkinson’s Foundation of Manitoba Canada. We’ll gather in Winnipeg and talk about what it’s like to be on this journey. Husbands, wives, those with Parkinson’s, sons and daughters–we’ll huddle in a room, learn a few things, introduce ourselves, and crack a few jokes.

Yes, that’s what I said. Jokes. Because one thing I know is that one weapon you need to fight the fatigue and frustration is to be able to make a joke out of anything, especially the things that bug us, confound us, and are generally considered off limits. And let’s face it–life is funnier when you have someone to share it with.

There will be close to 200 caregivers tomorrow gathered in one room–and it’s my “job” to give them hope, to give them a few minutes of feeling like they’re part of a tribe–they’re in the “in” crowd. Caregiving is cool because it’s a community of people who care, really care.

As an author and speaker it’s my job to point out the ridiculous, the hilarious, the over-the-top so insane moments that come with Parkinson’s. And as I watch these tired souls nod, chuckle, nudge each other, and smile…I feel like I did something meaningful with my own experience.

I’m so blessed to have had such a difficult mother! (Did that just come out of my mouth?) I’m so glad she was a pistol–because she taught me stand up for my self, and at times, to stand against her. Our difference made me define myself, and even the the hurts we inflicted on each other are now a part of our fabric–and they’re part of what I share and weave into my stories.

If I didn’t tell the truth, these caregivers would know. It would be like trying to lie to a front line sharpshooter about the realities of war. I’d be shot on the spot. I think they call this friendly fire.

I’ll share about our numerous mother-daughter fights. How she told me how to drive, how to cook, how to dress, how to make her bed. When she’d get really bossy I used to say that a small country was missing their dictator. We learned how to deal with the tremors, the pauses, the hiccups of “P.D.” as my mother called it–with humor, patience, and grace–depending on what was needed at the time. 

I’ll even go up to the edge of decorum and dangle my toes over–share how I thought of rigging up a large spotlight in the corner of the room so she could “go to the light.” And then I’ll take them where they’re afraid to go alone. We’ll  talk a little about their own lives, their own dreams-on-hold, and what it will be like later–after their loved one is no longer on this earth–how they’ll love and remember them and incorporate them into their being–and figure out who they are and where they are once again. 

And I’ll encourage them to look around–at their “peop’s.” This room is their tribe. There’s someone here they could email or call. There’s someone here who knows a thing or two about their particular current issue–and how we help each other at our points of need.

That’s the power of community. As isolating as caregiving is, it also makes us vulnerable–and that’s a good thing. We meet, come to gether only where our lives intersect.   

I know how tired you are. I know you don’t consider yourself good company.

But you need people–and they need you. You can start giving back now (what, you didn’t realize this was part of the bargain?) There are new caregivers every day. They’re your neighbors, your cousins, your friends, and they need your wisdom, advice, and your “here’s what not to do” list. When life presents you an opportunity (and it will), I hope your ears will perk up and you’ll remember this blog, and you’ll know it’s time.

Finding your tribe means you are willing to step into the circle.

~Carol O’Dell

Author, Mothering Mother

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Caregivers are feeling the pinch just like everyone else, but there is a difference. Many caregivers are used to caregiving on a dime. They’ve been on a “controlled” budget for years, and yet they may be reeling from their shrinking savings, or a recent change in insurance coverage that leaves them short. Another worry. How can caregivers make ends meet and not compromise case for their loved ones?

I don’t know about you, but I grew up with two very saving people. My parents were married in 1929 (and we all know what happened that year, managed to find jobs through the depression, then Daddy fought in WWII. I’m one of those kids that grew up with stockpiles of canned goods in every closet.

My mother was the original recycler–bread wrappers, aluminum foil, buttons, shoe strings…you name it and it got reused. But when my mom got Alzheimer’s and I became her caregiver, let me tell you, all that worrying and hoarding turned ugly. She fixated on things (part of the disease), and sadly, fear and worry grew with age. Being a sand-gen mom meant I had to keep everybody going–meals, laundry, meds, doctor appointments, kid’s needs filled my head and my heart and my hands. As it should be.

I’m not going to insult your intelligence by telling you to clip coupons or turn lights off in unused rooms. You know to put extra water in your soup and buy day old bread. I’m more concerned you’ll take “saving” too far and not get the things you really need.

It’s not easy, but I want you to know that you can do this. You can figure out how to handle your finances even in this tough, crazy time.

Caregivers possess a very important skill: ingenuity.

We’re problem solvers par excellent. We’ve had to figure out how to budget our time, our strength, our groceries, and even our sleep. And if you’ve gained a skill in one area, you can transfer that ability to another area.

So I’m going to give you some strange advice: Don’t go crazy with cutting back.

Why?

Because you have enough on your plate.

Because you’re probably already pretty saving.

Because you already have enough to worry about.

Because it’s best to concentrate on one or two areas where you really can save or get help.

Because your loved needs you to care more about your relationship than saving six bucks at the grocery store.

Because time is precious–even more precious than money. 

It’s easy to get caught up in the frenzy you hear in the news. It’s easy to panic. But panic won’t help. Turn off the news. Put on a CD, some music, a book on tape–whistle, call a friend.

Your role as a caregiver, (which also means you’re a spouse, a daughter, a son) means that you don’t get to freak out. You have many hats to wear. Your job is to keep the big picture in perspective–managing everything from your home to your health, from your loved one’s health (including mental health), and even dealing with issues of the dying process–grief, hospice, and death. You have to know when to forget the world and just hold hands.

If you’re considering doing without something–lights, heat, filling up your car with gas, renewing your license, foregoing that doctor’s appointment, or eating red meat–ask yourself this question: Can I live with the consequences of doing without this? If the answer is no, or it’s really taking a chance, then it’s not worth the risk. You can actually wind up spending more money by doing without something necessary–and then trying to play catch up.

 Caregive on a Dime:

  • Is your car older and paid off? You might want to consider changing your coverage and drop your comprehensive coverage. Your insurance will go down, but realize that if your car is stolen, vandalized or weather damaged, it won’t be covered. You’ll only be covered if you “collide” with another car. 
  • Ask your doctor before changing your prescriptions to the generic version. Why? Not all geriatric meds work the same. I know someone who had a reaction when switching to generic–it caused major problems. 
  • Ask. Ask your bank if you should refinance (assuming your home isn’t paid off). Ask for a discount. Ask for assistance. You’re entitled to services you probably don’t even know about. Call up your senior center or your elder affairs office and start asking for help.
  • Consolidate houses, cars, and incomes. More and more families are doing the multi-generational living thing. It makes sense–brothers, sisters, ex’s, and parents are all figuring out ways to live together.
  • Ask if you qualify for any prescription programs or trials. Ask your doctor, your pharmacist, or your elder affairs office for more details.
  • While coupon cutting and sales can help, a caregiver is stressed for time. Don’t kill yourself driving to three stores to get your basic groceries.
  • You can get free or reduced price supplies for adult diapers, food supplements, and other home health aid products. Check at www.qualityeldercare.com, or www.elderdepot.com, or  www.agingpro.com. Keep asking and keep looking for what you need.
  • Choose to be happy right where you are. Live small, but find ways to give yourself a few creature comforts.
  • Watch out for depresssion. If you’re on a tight budget, it’s easy just to hunker down and try not to move–but that’s not healthy. Be sure to do the simple things–take your vitamins, stretch, call a friend, and get outside at least ten minutes a day for that very necessary vitamin D.
  • If things get mad, make some noise. I call it having a “Shirley MacLaine Moment.” Remember Shirley in Postcards from the Edge when she lets loose on the nurse in order to get pain medication for her daughter? Sometimes you have to let loose. Yell, demand, make noise. Don’t suffer in silence. Don’t cave in and give up. Don’t go hungry or do without needed medication. Call up a local church, shelter, senior center and tell them how bad your situation is–oh, and don’t forget those relatives you rarely ever hear from–call them too. But don’t cry wolf–a lot of people are in dire circumstances–and you may only get one shot at help, so use it wisely.

Keep life simple, appreciate life, and keep it all in perspective. You’ve lived long enough to see good times and challenging times. The only constnat is change. Please know that there are people out there who care, so don’t sit behind your front door and give up.  Hope is your greatest weapon. Hope is food for your soul.

~Carol D. O’Dell

Author of Mothering Mother

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