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Archive for the ‘sandwich generation’ Category

Do we always get along? Hell, no! That’s what I wrote in a recent article that’s now featured on The Shriver Report.org. (http://shriverreport.org/mothering-mother-caregiving-dementia-carol-odell/) People tend to romanticize caregiving–people who aren’t in it, or who haven’t been in it for very long. It’s the difference in making a movie such as Black Hawk Down compared to actually being in a real time war–bullets, IED’s and raining shrapnel down on your head. Caregiving days aren’t filled with marshmallows and clouds (all fluff). While there are tender moments when you can hear the angels sing, when you and your loved one have a very real and touching moment–these are rare because face it–relationships are, for the most part, messy.

Caregiving is part one part grit and two parts guts, and if you’ve always had issues with confrontation, then guess what? Here’s your own personal scavenger hunt because you will confront everybody from your sister who doesn’t want to pitch in–time or money-wise, to the home health aide who grabs your mom’s arm just a little too rough, and onto the CNA who whams your mother’s leg into a metal part of the underside of the bed and cuts her leg on the day of her discharge…and then tells you that you’ll have to go back to the ER (with its two hour wait and enough flu germs to warrant a quarantine) in order to see if her leg is broke (that really happened to a mother of a friend of mine).

Women are still, the primary family caregiver. Not that there aren’t amazing men out there–spouses, sons, brothers who are stepping up and never thought to do anything other than care for their loved ones. I get to meet these guys and let me tell you, they’re sexy. Nothing is more attractive than a good man who has integrity and heart, and I ought to know a thing or two about this because I happened to be married to one. Still, when it comes to sheer numbers, women take on the brunt of the caregiving experience. They’re single, divorced, dealing with their own health issues, or depression, working, raising kids and grandkids, and on top of all that–they’re caring for a parent, and sometimes two.

Stats on Women as Caregivers from the Family Caregiver Alliance/National Center on Caregiving:

Estimates of the percentage of family or informal caregivers who are women range from 59% to 75%.6, 7


The average caregiver is age 46, female, married and working outside the home earning an annual income of $35,000.8


Although men also provide assistance, female caregivers may spend as much as 50% more time providing care than male caregivers.9

When I said, “Hell yes, to caring for my mom,” I didn’t mean that caregivers have to go it alone–nor should they. Caregiving is a team sport. You simply CAN’T meet all of your loved one’s needs. You can’t. They need to be surrounded by a community. You can’t begin to meet their physical and relationship needs, and in fact, you do a great disservice to you both by not opening up your heart and our home to others. Sometimes it’s simply because it’s a bruise to our ego to admit we can’t do it all, and other times we don’t even know where to begin to ask for help. It’s also true that you or your loved one may not find a good fit right away. Whether you call a local church and ask for a volunteer, call your local senior center or your local/regional Council on Aging to find out what resources are available, the key is to not give up.

Caring for my mom would eventually include my family–husband, daughters, her friends (one who graciously came down so that my family could slip away for a weekend), relatives who called and offered prayers and encouragement, home health aides, and eventually the good folks (chaplin, nurse, home care aides, coordinator, etc.) at Community Hospice of Northeast Florida. It took all of us–and it gave us purpose and a common connection. Saying “Yes” to caregiving also means saying “Yes” to the circle of care you and your loved one needs.

The Shriver Report.org. The Shriver Report.org is launching a site for women, by women (mostly) talking about subjects that matter–to us.

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“Why haven’t you called?” “I want to be independent and live by myself.” “You’ll miss me when I’m gone.” The push-pull of caregiving can send you into an emotional whiplash. Yet, it’s what we do–as family. We send mix messages. Caregivers feel guilty that they’re not doing enough, and then get whapped with “Back off, I don’t want you all up in my business!” What’s a caregiver to do?

It’s tough, but the healthiest thing a caregiver can do is to stay present in their own lives and refuse to get tangled in the emotional web of someone else’s volatile unpredictability. What would you do for your loved one if you could step away from the guilt, resentment, worry, and fear?

Some of us are afraid we’d just walk away. Some of us can’t even begin to imagine a life without these negative feelings driving us. Most of us forget to start and end our day with a sense of calm presence realizing that the only person we can truly give anything to–is ourselves. Until our own cups are full we have nothing true and good to give.

We can’t drive a car without gas. It simply can’t be done (not counting electric, of course, and even they need charging regularly). When our tanks are empty we’re stuck. In the end, we sputter, panic, and then find ourselves stranded on the side of the road. That’s what it’s like when we continue to give and give without adequate sleep, without renewing our joy, without taking care of our own health. We sputter just before we burn out.

Most of us enter adulthood with a complete set of emotional baggage. Our parents got us to do what they wanted mostly by fear tactics: stay in bed or the boogie monster will get you, make good grades or you’ll be grounded, don’t get pregnant or you’ll be disgraced…from little things to big we learned to live in fear. Fear of failing, fear of displeasing those we love. It may have worked (temporarily), but there’s a price to pay for living in that much fear. We either cower or rebel. Or…we learn to stand up for ourselves.

The challenge is to stand up and say loud and clear, “Wait a minute…wait just one darn minute. I’m tired of being afraid all the time. I’m tired of trying to please everybody else, even when it’s not good for me.”

And that may be the irony that comes with caregiving. It gives us yet one more chance to grow up. To really grow up. We no longer need to cower or rebel. We can speak in love, and stand in our own truth. We choose to no longer be controlled by fear. We can love because we choose to. We can give, and at times, even sacrifice our time, money, and energy for the good of someone else, but it’s with clarity and choice, and often short-term that we step into that place of sacrificial love.

We learn to say no. We learn to stay present in our own lives first. We learn to allow someone else to feel anything they want to feel without dragging us into their vortex.

It’s one of the last and greatest gifts our parents/loved ones can give us. The opportunity to revisit old issues with new eyes.

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Imagine a battlefield. People are wounded. Some are screaming in pain. Others are close to death. It’s easy to freak-out, but as a caregiver in the midst of your own war zone, you can’t afford to panic. You are the triage nurse. You have to float above the scene and figure out how to not only care for one, but manage many. This doesn’t mean you don’t care, that you don’t wish you could stop right there and cry or scream or freeze and go numb. You can’t. Not now. Not yet.

You may not recognize that you’re living in a state of panic (or drama) because it’s been so long that it’s your new norm. You do what’s right in front of you. The person who screams the loudest, demands the most gets your attention first. The one who needs an MRI, a refill on meds, is in the hospital can pull all your thoughts and energy toward them. The problem is, someone else, the person who is quiet, who is suffering emotionally, who isn’t “in your face” may be the one who is in the most danger. Being in a sandwich generation is common, and it’s so, so hard to choose between your child and an aging parent–and every day, every situation is slightly different.

Maybe it’s your marriage that’s taking the brunt of all your caregiving. Maybe it’s your child or grandchild who needs your guidance. Or maybe it’s you and your health who has stepped aside too many times, who doesn’t want to bring attention to the fact that you’re cramming painkillers (think about that word for a moment) because your back is in spasms. Ignoring and/or denying what’s right in front of you is easy when you tell yourself you don’t have time to do it all, but there are things you’ll never get back (your years with your child, your health can’t always recover).

If you’ve ever watched a great medical show you know how the scene plays out–the one who is in charge–who makes the tough decisions is why in the end everyone gets cared for. They slice through the noise, through the fights, the family members pitching fits, and they zero in one what has to get done first. It’s their ability to detach that makes them so effective.

There’s nothing like a cool head in a chaotic situation.

Here’s a short caregiving triage checklist:

  • Recognize the situation
  • Prioritize what needs to get done/who needs your initial attention
  • Make a plan
  • Get others to help
  • Recognize that you won’t catch everything and accept that
  • Don’t get sucked into one person’s drama
  • Don’t be afraid to be vulnerable
  • Remember that sometimes all you can offer is connection–holding hands, a comforting word
  • When it’s over, assess and process–it’s important that you do feel, you do acknowledge what you and others have gone through

It may sound cold–when it’s your mother, your partner, your child, but it’s not. Everyone will feel safer and calmer when you’re not in caregiver freak-out mode. We don’t always have the luxury of falling apart right on the spot, but it’s important to step away–into your closet, in the privacy of your car–and feel what you’re going through. To feel your losses, your fears, to find someone you can confide in, and to let go and let it all out. Choose those moments and take them. Holding it together all the time is beyond exhausting and all those emotions (worry, guilt, resentment, fear) will leak out in the most inappropriate ways–so when the initial full-blown crisis begins to subside a bit, step out and give yourself permission to feel. 

 

 

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

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

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

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

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

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

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

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

~Carol O’Dell

Author of Mothering Mother, available on Kindle

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

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

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

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Forget Kubler-Ross’s five stages of grief. They’re merely a jumping off point. Grief isn’t linear. Grief is multi-layered and doubles back on itself. Grief is raw. For many, it’s the closest a person comes to unhinging–to a break with reality. Getting through grief isn’t easy and isn’t predictable. Getting through grief is different for each one of us, but the more we share, the more we reach out, the more we help each other.

Suicide. Murder. Car accidents. Cancer. A sudden heart attack…or the long and winding road of Alzheimer’s. Grief doesn’t start at the point our loved one breathes his or her last breath. Grief is about loss, and loss can start months or even years before death takes the ones we love.

Grief is biological. Animals grieve. Watch this YouTube video where an elephant herd has found the bones of their matriarch. They form a circle around the bones, pick up her bones and hold them in their trunk, feeling each crevice with their trunk. This collective sorrow is healing–and even elephants know they need to grieve.

And yet some of us don’t show grief.

We don’t cry at funerals.

We don’t sentimentalize those who have gone before us.

We show no emotions–does that mean we’re heartless?

Showing and feeling grief are two different things. Some of us don’t share our emotions with many others, but that doesn’t mean we don’t feel them.

Emotions don’t go away simply because we squash them down and cover them up–they ooze out the sides of our life. We overreact to a traffic jam. We drink too much. Sleep too little.

Others get lost in grief. The sorrow, regret, and sometimes guilt swarm around us and threaten to steal all joy and purpose. Years go by–and we’re stuck. We can’t move on. We have no desire to. It’s as if time has stopped and we got off and the train sped away leaving us back then–back there.

So how do you get through grief–how do you feel it when you need to and then allow it to pass–before it destroys your life?

No simple answer to that one. I won’t pretend to know.

Sometimes we have to force ourselves to get back into life. Join a group and make ourselves show up.

For some of us anti-depressants seem to help. For others, a therapist. We need to talk it out.

For others, we have to allow ourselves to wallow for a while–until we get sick of our own juices.

No one way.

How to be there for someone else who is grieving?

No “you should be better by now,” or ‘I’m worried about you.” That doesn’t help.

Be willing to sit quietly beside them. Show up at the same time each day, or each week.

Listen. Offer distractions. If you have to, get in their face and fight for them. If they reject you, keep coming back.

One of the most tender betrayals of grief and how very long it can take and how different it is for everyone–and that we have no right to judge someone else’s loss–is the movie, “Reign Over Me.” It’s about a man who lost his wife and children in the 9/11 tragedies. It’s one of the more honest conversations about grief–one that I think might help.

What those who are experiencing grief need is to believe in hope again–some small sliver of hope.

And you might just be the hope they’re looking for.

~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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CNN reported this week on people with Alzheimer’s who develop violent tendencies. This is the silent story that many families don’t want to talk about.  Family members (aka caregivers) don’t want to expose their loved ones. These respected family members were once doctors, lawyers or indian chiefs, as the saying goes–Alzheimer’s is the great equalizer and doesn’t care who you are, and pays no attention to your socio-economic status

We don’t talk about it. We deny and cover up, and stop inviting friends and extended family over. Spouses lie, make up excuses about the bruises. We’re afraid. We don’t know what comes next–where will they go, what care will they receive, can we even afford this care–and what if they get so bad that even the care facilities don’t want to deal with them?

How long can–or should a family, a spouse, an adult child manage the care of a person with Alzheimer’s, and particularly one who is dangerous?

As I read the article (link below) I saw correlations to my mother.

I remember the day she dug her nails into my arms and screamed for a good five minutes her nose practically mine. She knocked me out of the way to go and catch her imaginary taxi. Her eyes were wild. I knew we were in deep trouble. I knew that as a mother to teenagers who lived in the same house that I could not subject them to this. We had hit our wall.

My mother had Parkinson’s for years. The Alzheimer’s bloomed after she moved in with my family and me. Or perhaps it was there and she hid it–and I played along. I had noticed “signs” of paranoia and anger early on, but I chalked this up to her rather expressive personality.

As the disease took hold, she lost the ability to reason. I couldn’t convince her that my children weren’t stealing the crocheted doll that covered the toilet paper roll on the back of her toilet. I couldn’t convince her those were only squirrels running on her roof, not thieves breaking in night after night. I couldn’t reason with her that no, she couldn’t just wander off and catch a taxi to “go home” in our Florida suburban neighborhood. It always baffled me that long after our names and other useful information left her mind that the word, “taxi” stayed. Mother grew up in Georgia, not New York. I think she maybe rode a taxi twice in her entire life.

I stopped talking about it. People would say, “Just put her in a home.”

Like it’s just that easy. Money concerns–memory disorder units and other types of Alzheimer’s facilities that take this kind of patient cost upwards of $5,000 a month and are not fully covered by Medicare or insurance. Not to mention the emotional hurdles of all the times she begged me to never put her in a home, the worry of who would care for her, see past this, and how in the world do I even find a place and people I can trust?

So I stopped inviting people into our home. I stopped taking her places where she tended to act out. It was random enough that i wasn’t dealing with on a daily basis, but the inability to sit still, to pace, to worry, to fixate on me or on something bizarre–all that was there pretty much of the time. She trashed her room with the veracity of whole fraternity who had chugged a couple of keggers. I felt as if I were living in a lockdown facility and I was the unarmed warden.

My concern was that I’d lose it–my cool, my temper, my ability to control the situation. I could forgive her. She had a disease, that’s all. I had to rise above it. I was the one responsible for my actions. I didn’t want to do something I’d regret. I didn’t want to mis-handle my mother or this situation–or cause harm to my children, my marriage, my life. That tightrope was beyond exhausting.

My mother’s violent stage didn’t last too long. She was spiraling fast. Soon, within a few months, she went from violent to forgetting how to swallow. At that point I chose not to use a feeding tube. I had gone from one impossible decision to even a worse one. The thing about having your loved one at home and not in a care home is that you are 100% responsible for these decisions–and you have to follow them through. You witness the consequences of your decisions. You stand there every day and question yourself a million times. You don’t get to get in your car and leave. You stay.

How bad can it get?

Well, I’m here to tell you that Alzheimer’s can give them super strength and amazing endurance.

What’s the percentage of people with Alzheimer’s who are violent? The stats say 5-10% (National Health Monitor).

It’s a lot like schizophrenia in that most people who suffer with this terrible mental illness are not violent, but those that are get a lot of press, and can indeed, hurt people. It may be small percentage, but it still raises alarms.

Some Behaviors That Accompany Alzheimer’s Are:

  • Pacing,
  • Repeated mumbling words or repeated sounds
  • Ticks, cursing, “ugly” (berated, accusatory, or sexual) talk
  • Delusions (visual or auditory hallucinations)
  •  Pounding on a table or hitting their head, hand or object repeatedly
  • Fixation on some thing or someone (paranoia, anxiety)
  • Biting, pinching, hitting, kicking
  • Crying, moodiness, and other outbursts
How to Handle a Person with Alzheimer’s Who Turns Violent:  (Based on the CNN article)

1. Back down.

Most of the time, the incident escalates when the patient does not want to do tasks such as undress, brush teeth or bathe. Don’t physically force the person to do anything, she warned. This could worsen the situation and possibly injure all parties involved.

2. When the patient is upset, apologize — even when it’s not your fault.

Using this strategy will buy you time and good will. Don’t argue with an Alzheimer’s patient, because you can’t win.

3. When the patient becomes agitated, change the topic. (Redirect)

Change the subject. Move to another location. Distract them by something fresh–the birds outside, pretend a friend has called (make the phone ring) play a song they like. “If you can stay calm, you can mirror that calmness back to them,” Kallmyer of the Alzheimer’s Association advised.

4. Keep in mind that the world is distorted for an Alzheimer’s patient.

Know your loved one. Do noises startle them? Are they more upset around a certain person or time of day? Do you know what calms them? Do you have them on a schedule that works well for both of you? Are they sensitive to sugar, caffeine, or even experiencing pain (toothaches, broken ribs, urinary tract infections, and other chronic pains oftentimes goes undiagnosed and can add to their agitation).

5. Call for help.

When in doubt, ask for help. Call the Alzheimer’s Association Helpline. 24/7 for confidential help.

1.800.272.3900         1.800.272.3900.

No one is going to blame you or take them from you–if you ask for help before something horrible happens. No one can judge what you’re going through, and no one can understand what you’re going through. Be confident and don’t be shamed by this. Get the help you need. Call 911. Don’t wait for a tragedy. Get the guns out of the house–now. Hide the knives. You can live with a butter knife until you figure this out. You’re more than just a caregiver. You’re family. As much as you want to give up–you can’t. But don’t go it alone. Don’t isolate yourself. Reach out–get help–share your story. We’ve all been shamed for far too long.

CNN article link:

http://www.cnn.com/2011/HEALTH/03/30/alzheimers.violence.caregiving/index.html?hpt=C1

Great resource: Elder Rage, by Jaquelline Marcell

Carol O’Dell’s book, Mothering Mother is now available for your e-reader! Kindle version availble here.

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