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Archive for the ‘care partner’ Category

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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Maybe you’re not the one doing the day-to-day caregiving–maybe you’re the spouse, partner, the one who would get “best supporting” if there were an Oscar or some other shiny statue given for “Best Caregiving Award.”

Being the sidekick behind or rather beside the caregiver is a VERY important and crucial role. I know because I’m not sure I could have done what I did–care for my mom who had Alzheimer’s, Parkinson’s, heart disease and lived with us–if it hadn’t been for my other caregiving half.

My husband, (my caregiving spouse) had a lot to contend with. He put up with my moods–my many, many spontaneous, combustible moods. He put up with some doozy mother-daughter fights–fights between my mother and me and fights between my daughters and me. (I’m beginning to realize I was at the hub of all the fights!)

He went with the flow, would order pizza if I was too frazzled to cook (the man can’t cook), would run our daughters to wherever they needed to go–or stay with my mom so I could. He did without vacations, built my mom’s apartment onto our house, picked up my mom when she fell, and seemed to do it with a good attitude instead of a “I’m not getting attention” whine that wouldn’t have gotten him anywhere anyway. I had my hands full and he knew it.

So I decided for this blog to turn to ask my husband, Phillip, if he had a friend who said, “My wife’s mom is moving in and needs caregiving–how do  I support her?”  What would he say?

How to Support a Caregiving Spouse:  (by a caregiving spouse)

  • Listen–a lot: If she needs to cry, hold her. If she needs to complain, give her the time and space to vent. Call her throughout the day. Turn off the television when she’s (I’m using the pronoun “she” but it goes either way)  talking.
  • Lighten her load any way you can: Pick up extra chores. Pitch in. Get the kids to help, too. Look for things that need doing–don’t wait to be told.
  • Pay attention to your spouse’s needs: It’s your job to take care of her so she can take care of others. Notice if she’s tired and make her hot tea. Rub her feet, wash her hair, offer to mom-sit, do the little things only you can do.  Consider it family care–not just something your spouse does.

Wow. It didn’t  take him but three seconds to come up with that–because he lived it. He was right beside me all the way. I can honestly say that he was my backbone when I didn’t feel I had one. He wrapped me in his arms day after day after day. He did without sex, sleep, decent meals and even a pleasant wife–many times over. He never complained. He seemed to know what I need and he wouldn’t let me give up even when I wanted to–because he knew deep down, I didn’t want to. He was there when my mom died, and he was there in those dark and lost days after.

Caregiving is hard on a marriage/relationship at times, but it also brings out the best in us. We see what we’re made of–and in the end, we look back at our lives and remember all we’ve been through side-by-side.

Caregiving is one of our journeys. One of many.

~Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

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You’re furious at your siblings for not helping you in caregiving  mom or dad. You’re outraged at your mom or dad or spouse because he/she said something really, really ugly that pushed all your buttons–and they expect and demand so much. You feel like you could just walk out the front door and keep walking.

That’s two types of caregiver rage–there’s many more. Rage is so off the charts that it consumes you. Rage is when you want to hit something (or someone) smash something, cry, scream and just absolutely lose it. You can lose yourself in rage, but it’s also a tool. Rage tells you that something is terribly wrong. Listen to it. Then figure out how to get out of this volatile place before it harms you.

How do you get out of being “en-raged?”

I won’t tell you to slap a smile on your face and go out into a field and pick daisies. That’s insulting. You may have every right to be that ticked off.

Getting out of rage takes time and comes in incremental steps.

Think of a marathon runner. They didn’t just put in their running shoes, open the front door and sprint 26 miles the first day. They started with a half mile walk around the block–a mile or two. Then they began to walk-jog. That’s where I am. I walk-jogged 3 miles this morning. That’s all I’m capable of. I envision myself walk-jogging five miles, and eventually jogging more than walking. But it’s going to take time.

If someone tells me to be happy when I’m not, it makes me even more livid! 

I have been so head-exploding hurt and enraged that it took me years to deal with it. Not kidding. I had some pretty big hurts to get over. I never ever thought I’d say this, but I’m not longer in-raged. If something happens that pokes the embers, yes, I can still get pretty worked up. But in general, I can observe my thoughts, my emotions now, I can see now that the other person was sick or hurt and they did some really awful things. No excuses, but I too have done some mean things, and we’re all accountable for our own actions. I’m out of the vengence game. I’m all out of hate–the barrel is empty.

You can’t let go of this crap overnight, or even in a few days or weeks–not when it’s huge.

Rage can turn into anger. Anger is like ocean waves. You can feel moments of absolute fury, but then there’s a lull. Sometimes, like waves, anger rolls in one on top of the other. Then, it’s calm for a while.

Anger can be notched down to hurt. Tears may come. Or screams. Good tears. Good screams. A baseball bat slammed on a pillow might feel really good.

Or anger might morph into resentment. It’s all part of the process. Resentment can be reasoned with–a little. Resentment may turn into disagreement. You can vehemently disagree with someone. You may not understand their viewpoint but you don’t feel the need to rip their eyebrows off their face. You can choose to walk away from a disagreement. You can choose your words, feel pity for them, and eventually, wish them no harm. It takes time.

So if you’re off-the-charts crazy mad right now. Don’t even try to be nice. Just try not to hurt anyone–with words of actions. That’s a big accomplishment, and it’s enough–for now.

Being at peace and joy may feel as far away as from here to Australia–it may feel impossible to get there. But do you know that if you want to go, you can book a reservation and fly to Australia? Yes, it’s a long way, especially from the East Coast, but it is possible to see koalas and the Sydney Opera House. First, you have to believe that Austrailia (peace and joy) is out there–somewhere–even if you can’t see it, or even get there today.

Forget about trying to make the finish line in one giant leap. You’ll land flat on your face.  Just get your shoes on, head out the front door and tell yourself you’re just going to stroll around the block. That’s all. First steps.

Carol O’Dell

Author, Mothering Mother

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For many of us, caregiving a spouse is in our future. We like to not think about it, or at least imagine that it’s a long, long time from now. For many, it’s a daily reality.

According to the Family Caregiving Alliance, there is a much higher likelihood of receiving care from a spouse than from an adult child. 
Nearly one-quarter (22%) of caregivers who are themselves 65+ are caring for a spouse. Personally, I think it’s higher than that.
And it’s not all the women who are doing the caregiving. 
I know lots of men who are caring for their wives through cancer, MS, heart disease and dementia.
 These men have my full respect. The ones I’ve met are kind, thoughtful, and are trying to very hard to give their wives the best of care. I’m sure there are many who are not like this, but I do have to pay homage to the ones who are.

So why does caregiving my spouse scare the bejezus out of me and most everybody else?

 Because my husband is my strength, my rock, the person I can rail against, nag, complain about–but would never want to do without.

Even when he gets the flu, I’m a wreck. I’m projecting into the future, seeing him years from now, weak, and me trying to care for him.

He’s 9 inches taller than me and about 60 pounds heavier than me, and the few times he’s had minor surgery, I’ve seen how difficult it is.

But that’s not it.  We’d find a way to make it work.

It’s not that it’ll be hard, exhausting, or challenging. I cared for my mom through Parkinson’s and Alzheimer’s. I’m no wimp.

So just why is it so hard to care give a spouse?

I’ll just vent and you pick the one that best fits you:

(some of them don’t paint me in a good light, but I’m being a guinea pig here so that we can all identify with our less than admirable selves)

I don’t want to become his “”mother.” (By that, I mean I want to remain his wife, lover, and friend).

I don’t want to be stuck by his side 24/7–I’m very independent.

I don’t want him to be weak–for me, or him. He’ll hate that.

If you’re sick, then I have to be well? What if I get sick?

Who am I now? How do I define myself?

I don’t want him to order me around all the time–and he will. I don’t want to fight all the time.

I don’t want to cry all the time either.

I don’t want him saying “thank you” a gazillion times a day and feeling guilty.

I don’t want it to be over.

I don’t want to watch him /her  slowly die.

I don’t think I can manage our life and home without him.

I don’t want the fun times to be over–the trips, the banter, the ordinary days.

I don’t want our world to grow small, isolated, and lonely.

I don’t want our world to revolve around doctors and medicine.

I don’t want that time to come when I can’t make him smile.

****

This just starts the list. No one wants any of these things. But until we can admit them, I’m not sure we can move on.

I know that the next step is to take this list and turn it into a WANT list, find the good in whatever life throws me.

I was at a talk for Community Hospice on Saturday at the Mary Singleton Senior Center in Jacksonville, Florida and I told this crazy story about a time when my husband passed out at an amusement park. He said he was dizzy, grabbed his neck and fell stiff as a board onto the gravel road.

I was freaked. I thought he died. And you want to know that first fleeting thought?
“You…(I’ll leave out the colorful phrase), you have died–died and left me to raise three kids? Alone?

I then began to pound on his chest (not CPR, even though I was trained) and yell in his face “Help!” What? As if HE could help us? I did it over and over.

Thank goodness, he started to come to, and then I had another thought…”He’s a narcoleptic! He’s going to be conking out all the time!”

I swear, I followed him, walking three feet behind him like some antiquated Japanese woman (did they ever really do that???) for the next two years.

As if I could catch him.

***

That true, but embarrassing example is a light hearted version of what wives and husbands feel everywhere.

Deep inside we’re all screaming, “Don’t leave me here without you!”

Spousal caregiving kicks up a lot of emotions. Some sweet and sentimental, some down right  self-serving. 

The only thing I can offer is:

  • Talk, talk often. Get used to this conversation so that if something awful happens, you’ll have practiced. Kid around, make jokes, talk about the “what ifs.” Nothing is as scary as an unsaid fear.
  • Tell your loved ones how you want to be cared for. Please, for your family and spouse, sign a living will. They are so, so easy. Go to The Five Wishes and request one or print one out. Don’t make your family guess and then fight or feel guilty because they didn’t know what you wanted–or they all heard something different.
  • Have health insurance, life insurance and long term disability or care insurance. I know the economy is tough, but try to keep these, or seek a governmental equivalent (for health insurance if you qualify). Murphy (as in Murphy’s Law) likes to strike the second you’re unprotected, and caregiving is tough enough without adding the stress of finances.  

If You’re Already Caregiving:

  • Be present. Each day is precious. Even if it’s hard, chaotic, or near the end, it’s a privilege.
  • Keep your blinders on when you need to. There’s a time to think about the future, and a time when this moment, this hour, is all you can deal with. When times get rough, make your life simple, quiet, and don’t go to all those scary places. It’s not the time.
  • Never stop being a spouse. I know that caregiving is a lot of “doing.” Meds, baths, physical therapy, doctor appointments, home health aids…after a while you can forget you’re a married couple. Never ever forget that this is the person you said ” I do” with. At times we have to force ourselves to step out of “Nurse Nightingale (or Nurse Ratchett’s) position and step back into that role that no one, no one but you can fulfill. You’re his sweetheart. You’re her sweetheart.
  • Give  up being perfect. It’s exhausting and impossible. It’s the quirks, the foibles, and the fights that define us. Do the best you can. Forgive yourself when you lose your temper, forget something important, or just can’t do it all. Look yourself in the mirror each night and say out loud, “You did well today. I’m proud of you.”
  • Trust that as grueling and dark as it is, you will find the strength, you will find your way through spousal caregiving. Somehow.

***

At the end of my talk, the very sweet woman had me sign her book. She could hardly talk, she was crying so. Her husband of 54 years has Alzheimer’s. I held her and cried too. I try to give tips and I try to encourage, but I can never convey how deeply I care. Your stories touch my heart, and sometimes, all the advice in the world won’t be enough. 

Caregiving a spouse is so hard. Why? Simple. Because we love them.

~Carol O’Dell, author of Mothering Mother

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Move over, Michelle Obama, cause Mama’s in the house.

That’s right, Michelle Obama’s mother is moving into the White House.

Marian Robinson quit her job 22 months ago to help care for the Obama girls while Michelle and Barack started campaigning. She’s now 71 and a retired secretary and she’s moving into the White House on a “trial basis” before giving up her home in Chicago. While the presidential campaign was underway, Ms. Robinson cooked the girl’s meals, shuffled them to their various activities, helped with homework and kissed them goodnight. That’s a big job, but it was for a big reason.

That’s something I admire–a family that figures out how to care for one another and when it’s the appropriate time to do so. I’m not too worried how she’ll be treated a few years from now when she needs elder-care or caregiving. She’s invested in her family, and love is almost always returned.

The White House will be full again, with a father, mother, two children, a grandmother, and a dog. I like the idea of those old rooms bustling with the sound of feet running up and down the halls, of a grandmother’s stern call to order and the yelp of a dog.

Multigenerational families aren’t new. People used to live together under one roof out of necessity–to run the farm, to continue the family business. In fact, it’s on the rise.

More than 3.6 million parents lived with adult children in 2007, according to census data. That number is up 67 percent from 2000. And in the new economic light, more and more families are choosing to “bunk up” to save on expenses, and as a necessity for those who have lost their jobs.

Somehow, we got away from that in my generation. We got independent, perhaps too independent thinking that money would be enough–or as my southern daddy would say, “We got too big for our britches.”

My adoptive mother grew up in a multigenerational house. She was surrounded by aunts and uncles (her mother was divorced and raising two children on her own in the 1910’s). My mother’s memories are good ones. A large table with lots of food and conversation. She said she felt as if she had many mothers, not just one–and it helped that her mother could work full time and her two children had someone at home.

Times haven’t changed that much. Marian Robinson is an example of millions of grandmother’s who are either raising or helping to raise grandchildren. We need each other. We need our mothers and fathers to be a part of their grandchidren’s lives. That’s how values and stories get passed down.

From all I’ve read, Marian Robinson is going to be a busy woman. She’s noted for her independence and will only stay if she’s needed. She may even purchase a home nearby just so she has some privacy and doesn’t have to deal with the day to day fuss life in politics entails. She’s no where near slowing down and has recentlycompeted in the Senior Games running the 50 and 100 yard dash. No matter where she chooses to sleep, she’ll be an active part of the Obama household and everyone will benefit from that.

It’s not that her value as a grandmother is in throwing in a load of laundry or chauffeuring the girls around, it’s that the children will be influenced by her wisdom and will have that sense of family and continuity that’s so important. It’s easy to caught up in the “doing” and not the “being.”  The most valuable gift our elders have to offer is simply who they are–a part of us. Their life, their experiences, their stories shape and define future generations.

I have seen families take advantage of their elders–used them as free babysitters–and that’s not healthy for anyone. Sometimes we have to say, “No, not tonight, I have plans.”

As my mother moved in with my husband, our daughters and myself, I knew I had to strike a balance. My mother had to fit into our home, and in return, I (we) needed to treat her with respect and privacy. These are the concerns multigenerational families face. You don’t know exactly what your issues are going to be until you’re there, all living together. One person becomes needy, another bossy–someone needs more privacy than another, and…somebody always gets jealous. It’s just human nature and no matter how old we are, we still get jealous or needy at times.

My mother was always a part of our lives, and I’m so grateful that even though she was an older grandmother (she was 74 when her first granddaughter was born), she got right to being an active grandmother. She used to come over and get our girls and take them for an overnight stay as soon as they were out of diapers. They remember going to eat breakfast at Shoney’s with my mom and how proud she was showing them off to anyone who walked by, and then going to K Mart to hold the dolls. She’d buy them something small and even though these times weren’t fancy, they were just enough to begin to build a relationship–and memories. Our daughters remember my mother’s songs, her prayers and Bible stories, her stories–and even her quirks, her humor, her fears–everything that made her a whole person. So when it came time for my mother to move in with us, they expected it. In many ways, she was already a part of our lives.

Just the other day, our 21 year old daughter said she was glad her grandmother lived with us. That’s saying a lot, because she was there through it all, the Alzheimer’s, the heart attacks, and the end of life. She’s now able to measure the whole of the experience and not just focus on a particularly dark time.

What I wish for the Obama’s is that everyone will be patient and understanding with one another during this time of change. My advice, if I may offer a little–be quick to forgive, laugh at your mistakes, value your togetherness, and respect each other’s differences.

Getting used to living together and under such scrutiny is bound to cause some nerves to be razzled. Just as with any family, it takes time to learn to live together. But it’s worth it. There are times when we need each other, and that’s the best definition of what makes a family that I can think of.

In the end, the Obama girls will be surrounded by family, by legacy, and by love.

I wish them (and all of us) the best.

~Carol O’Dell, author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

Familly advisor at Caring.com

 

 

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I’m a keeper. I didn’t know I would be, but I can’t imagine parting with Daddy’s jacket.

It’s brick-red suede, and has completely worn through at the edge of the sleeves. It no longer smells of him, but I keep it.

I remember when I was a child, riding with him to Sears on Saturday morning just to buy salted peanuts and look at the tools in the tool department. He wore that jacket. I was adopted and maybe that makes me more sentimental, I don’t know, but keeping my past is important to me.

I also have his Bible, his wallet, his watch, his glasses, and a yellow shirt I remember him in.

I have lots of items that was my mother’s–her mink coat, her Russian coat, purses, jewelry, a Sunday suit, and more Bibles. (My mother was a preacher, so trust me when I say she had lots of  Bibles).

I also have their photos, letters, recipes, Daddy’s old tool chest, the first gift he ever gave her when she was just 14–it’s a small cedar box that’s in the shape of a heart. If  my math is right, he gave it to her in 1925. I can tell the story of  how they met as if it were my own.

Why do we keep our loved one’s clothes?

Like a child’s ratty blanket, we hold on. Safety, security, identity.

Our momentos are in boxes, on shelves, in cabinets, and I know I keep way too much, but how do you let go of such things?

It’s all I have now, and I believe that by pulling out Daddy’s coat or by pinning on one of my mother’s broaches, I can see them clearer, remember better. 

I remember Daddy’s bushy eyebrows, the thickness of his fingers and how I could barely squeeze my child fingers through his. I remember that jacket and how he’d wear it when we went to see his family–his sister and brother every Sunday afternoon. His faithfulness amazed me then. His loyalty and tenderness is something I value in a man.

There are issues with keeping things. Psychologists might tell you that you’re not moving on, not making room for the new. I understand the logic. A friend recently visited my home. I hadn’t seen her since my mom was alive and she commented on how much my house had changed. My mom’s antiques are no longer on display. Some have been give to other family members, others sold.  This is a slow process–for me.

It no longer looks like my mother’s house. After moving my mother and her 40 years of not moving, her collections oozed out of every crevice.  I barely had room for “me.” My mother was one powerful woman. She had a way of taking over.  I let her reign, so to speak. As her daughter and in those last few years, caregiver, I learned how to hold my ground and still allow her to feel as if she had some independence. 

But now, I have a new couch, a new dining room table.  Her furniture has been divvied up among my daughters. I’ve reclaimed my throne, so to speak.

Ironically, I consider myself more of a futurist than a person who lives in the past. I lean toward modern/eclectic design and  and music and I’ve made a slew of six month, one year, five year, and then year plans, always writing my future. I’m a list maker–a list for the day, the week, the month, sometimes two a day. I like noting the little things I’ve accomplished. I’ll write something down I just thought of just to get the thrill of crossing it out.

But when it comes to my parents, I’m a keeper, but it no longer keeps me  in the past. I’ don’t think I fall iinto thecategory of  “not moving on.”

I like to think of their clothes and personal items as a cushion to my life. As if they somehow support me and connect me. Just one look at that jacket and I’m four again. No other Bible comforts me like Daddy’s. I don’t need to even open it to feel a sense of guidance.

It takes time to get to a place to let go of at least a few things.

After your loved one dies, part of grief is when you still try to live in your old life with old clothes and the way things used surrounding you. 

You weren’t ready for him to die. You don’t want to date, get a new job, or have to figure out what to do with yourself next Christmas. You don’t want to move on.

 Some people get rid of things too soon. Others, too late–it’s different for each person. Finally, you begin to make your own way. Reinvent yourself. Find who you are–now. They are in you, a part of you, but you are changed. You have to go on.

What’s the time frame? Varies. I know people who were clearing out closets before the funeral. I know others who open a closet ten years later–and there’s everything just as it was.  Of course, there’s always a chance of getting stuck and not being able to let go. You run that risk.

For many, somewhere around or after that first year mark, things shift–a little. You don’t have to make yourself do everything. Some things come a little easier. A little. For others, it’s two, three years before they can feel anything but blinding loss.

But somewhere along the line, you let go of a few things. You call up a family member and offer them a book or a knick-knack. You sell something, drop items off at Goodwill or another charity.

You live with the empty space for awhile before you figure out how to fill your life again. And  the items you keep become more intended, more precious. They go in top drawers and the chest that sits in the guest bedroom. You leave out a few photos, a book–a silver comb that sits on your dresser.

Your loved one is now incorporated. Their clothes, their memories are a part of you, in your house so to speak–but they have a place and not like a box you trip over whenever you walk into a room. Anytime you need to, you can slide open a draw and remember. Find comfort.  

And now, there’s also room for something new. 

~Carol D. O’Dell

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

Carol is a Family Advisor at Caring.com

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New Year’s is a time of hope. Wipe the slate clean. Begin again.

I was on a walk the other day, thinking about resolutions. Thinking about the word, resolve.

To re-solve. To solve something again–that it was once solved. So a resolution is a re-solution.

That means that once upon a time it wasn’t a problem.

That’s true.

We weren’t always overweight. We didn’t always drink too much, smoke, spend to much, or see our loved one’s too little. 

So, a resolution is just getting back to that former state.

Think back, when was it that you weren’t overweight?

Perhaps your teens? Before kids? For some of us, we have to think back even younger.

But there was probably a time. You didn’t think about food all the time. You rode your bike. Played little league.

Your body remembers this. In sports, they call this muscle memory. If your body (or mind) has ever done it once, it remembers–and can do it again.

This works for more than just weight.

So I thought about it–I used to spend copious hours on my bike as a kid. I can bike now. I used  to sing for the heck of it. I can sing in my car. I used to draw. I think I’ll go outside and draw that live oak tree in my back yard.

Sometimes we make things so big and so hard. Simple pleasures are deeply satisfying.

We buy too much, eat too much, smoke and gossip because we’re trying to fill a hole.

 We have to (at least I know I have to, I have no right to speak for anyone else) learn how to be with ourselves–and be content. 

To be content is to have content. (Sorry, I’m a word-nerd)

To have content is to have substance–something meaningful that fills up space.
I love the word contentment. To be deep in joy–to belong–to not want to be anywhere else or with anyone else.

 

According to GoalGuy.com, here are the top ten resolutions: (every site I researched had a similar list, so it’s pretty much a given)

 

Top Ten New Year Resolutions

 

                1. Lose Weight and Get in Better Physical Shape

2. Stick to a Budget

3. Debt Reduction

4. Enjoy More Quality Time with Family & Friends

5. Find My Soul Mate

6. Quit Smoking

7. Find a Better Job

8. Learn Something New

9. Volunteer and Help Others

10. Get Organized

This list tells me we’re all pretty much alike. There’s things we need to stop doing–other things we need to start. Push and Pull.

 

So, just for fun, I propose a Top Ten Caregiver’s Resolution List:

1. Sleep. Sleep more. Sleep any where, any time, any how. Dream of uninterrupted sleep.

2. Not totally blow my top at any one–a nurse, my loved one, the pharmacist…this could be tough (especially when you’re dealing with Alzheimer’s)  

3. Not eat my way into oblivion–food is not my best friend (repeat 10 times a day)

4. Remember where I’m driving–zoning out is dangerous–I may need a loud buzzer horn or taser. Stess causes zoning out, I’m sure.

5. Walk every day. Even if it’s just to the mailbox. Walking is good. Sun is good. I need this.

6. Get out and meet people. Normal people not in the health care/elder care profession. There’s a great big world out there and I need to see it once in a while.

7. To actually want sex and intimacy and do something about it. Sex drive? Is that like, four wheel drive? Yes, i remember….vaguely.

8. To get dressed in something other than a jogging suit–something NOT with an elastic waistband. This relates to not eating a whole frozen pizza and walking to the mailbox, doesn’t it?

9. Do something for me, just me. People do that? Lunch with a friend, getting my nails done, putzing through an antique shop–caring for me is actually part of caregiving…who knew?

10. Ask for help. Pray, cry, meditate, journal, scream, go to a support group, go to church, ask for respite care, pay for care for an afternoon off, try adult day care for my loved one. Ask, ask, ask–caregiving is not a lone sport. It takes a village.

Bonus–

11. Not be afraid–of caregiving, cancer, Alzheimer’s, ALS, or death.

Fear is a big woolly monster trying to gobble up your precious days. Turn around and face  it–yell big and loud–“I’m not afriad. I can do this.”

12. Attitude of gratitude. Each night before I go to sleep, I ask myself, “what was the  best part of  the day? Usually, it’s a dragonfly who stopped right in front of me–or a neighbor who gives me a big smile when she sees me. It’s the small moments that stick. Being grateful in a time in your life when so much is beyond your control is a way of turning the tables in your favor. The more you’re grateful, the more you have to be grateful for–it’s like a fan that keeps expanding.

Just like the other list–things to stop doing, other things to start. Push. Pull.

New Years is a magical time. Resolutions represent hope. Hope for change. You already know how to do this. After all, it’s just a re-solution.

 

~Carol O’Dell

Author, Mothering Mother–available on Amazon

 

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You want to know what time of year is the busiest for neurologist’s who specialize in Alzheimer’s, dementia, Lewy Body, and other memory disorder conditions?

January.

Why?

Because families tend to gather during the holidays.

Maybe it’s been a few months (or even since last Christmas) since you’ve seen mom or dad.

Or, maybe your spouse says something odd at the family get together.

Maybe he asks if Aunt Tilly is coming even though she’s been dead since 1992.

That’s how it happens: We notice the difference in our loved ones if we haven’t seen them in a while–when their normal routine is disrupted and it triggers a different response.

You fly back home, but now, you’re concerned.

Last Christmas you just attributed it to aging. Everyone forgets now and then, right?

But Alzheimer’s and other neurological/memory loss issues go beyond losing your car keys.

Visit the Alzheimer’s Association site (click here) for the ten most common warning signs of Alzheimer’s.

What’s the next step?

If you live far away from your parents, you may want to start visiting more often–or you may want to check into geriatric care managing companies who can help keep an eye on your loved one’s situation.

Does Mom (or Dad) have Alzheimer’s? What do I do?

  • First, check out the ten warning signs
  • Start calling and visiting more often–no one wants someone to butt into their life if there’s not a real relationship to back the sudden concern
  • Talk to your other parent (if they’re still alive) ask them what they think
  • Talk more than once–they may be resistant at first–ask their opinion and reassure them you’re going to be involved and will help find solutions
  • Get your parent (or other loved one) into see a neurologist that specializes in Alzheimer’s/geriatric patients
  • Get an official diagnosis
  • Create a folder/organizational system to keep all the paperwork associated with the care of your loved one–you’ll need it
  • Consider medications
  • Begin short term and long term plans
  • Much of life can continue on as it is now–make any necessary changes gradually. It’s important that your mom or dad doesn’t feel like this is a death sentence. You can still have a rich and meaningful life–encourage your parents/spouse to continue on with church, activities, vacations, and every day activities for as long as they can.
  • What insurance do they have? Do they have long term care coverage?
  • Contact your local/regional/state department of elder affiairs or council on aging–these are government organizations that have a bounty of information
  • Go online and begin to help research community care resources such as adult day care centers, respite care, caregiver’s support groups. There are great websites such as Caring.com and Health Central to help educate and support both the person facing the disease and the caregivers and other family members.
  • Encourage your loved one or spouse to attend an Alzheimer’s (or other memory disorder they may have) workshop/talk at their local hospital, or other care facility
  • Look online for your local chapter of Alzheimer’s Association, Parkinson’s Foundation, etc. They’ll have a list of resources in your area.
  • Consider home health care–many private company’s such as Comfort Keeper’s offer at home care and assistance on a daily or weekly rate
  • Talk to other family members, especially siblings and brainstorm about ways to help–calling, home care, repairs, time off for the other spouse
  • Talk to everyone about a long term plan. If your mom/dad/spouse ever needs to go into a memory disorder care home in the future, what are your options?

This is just a basic list, but it’ll get you started.

I had ignored the warning signs that my mom had Alzheimer’s/dementia for a couple of years.

She wanted to continue living independently, and I wanted her to as well–for her sake, and so I could go on my life.

I was in my late thirties, I had three teens to raise, a husband, a career–I really didn’t want to face the fact that my mother had Alzheimer’s.

I didn’t do any of this deliberately. I didn’t even know I was doing it. That’s why they call it denial.

By the time I figured it out, (my mother hid it, made excuses) she was almost past the point of medication helping. Don’t wait that long.

Emotionally, you and your family have some issues to deal with as well.

I’ll address that in another post, but know that it’s normal to feel kicked in the gut, angry, shocked, scared about the future–and concerned that if your parent has it, you could get Alzheimer’s as well.

You’re not alone. Sadly, millions face the diagnosis of Alzheimer’s every day.

The good news is, there is help.

There are more resources, medications, and support out there now than there ever was.

You’ll figure out how to do this–how to handle the changes. Life can still be good–for everyone.

Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

Family advisor at Caring.com

 

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I wrote these words during the early weeks after my mother moved in with us. It captures the concern, guilt, and trepidation we all felt on this new venture.

 

I didn’t feel I had a choice–about insisting my mother move in with my family and me. My mother’s Parkinson’s and early signs of dementia had grown to the point that I didn’t feel she was safe living alone, or that her care was something I could continue to farm out to paid care, extended family, church members and neighbors. She needed consistency. She needed me.

 

 

But it wasn’t easy on either of us.

 

 

Here’s an excerpt from my journals, and what later would become my book, Mothering Mother.

 

 

“I think Mother would just like to sit down and cry. She can’t figure out the layout of the house and says she doesn’t want to sleep downstairs. I explain that there isn’t a downstairs, but her apartment is on the opposite end of the house from my bedroom. It’s so far away that she must feel like it’s on a separate floor. She keeps saying she wants to sleep next to me. Not in the next room, but next to me. She walks around touching the walls as if they could collapse on her if she were to let her hands down. She sits in my dining room chair with nothing to do. I’ve made her breakfast, given her the paper and told her I need to unpack the kitchen, which she can see me do from where she’s sitting.

I feel as if I’ve taken everything from her, which she enjoys announcing to everyone, from the bank teller to the podiatrist. She makes sure to note that she’s selling her house, moving in with us, and giving up everything—her church, her friends, and her home. I stand beside her as she regales them with her sob story, wishing I could add what I am giving up—my freedom, my privacy, my mind, and that I’m not doing this to hurt her. I’m trying to help. Instead, I smile and pat her hand, hoping she’s receiving the sympathy and attention I can’t give.”

It took some time for all of us to get used to living together. I still had two teenage daughters at home. Along with “mother issues,” I had to contend with boyfriends, curfews, teen drivers, and the ever threatening emotional outburst from any of them–at any time. Mother was usually the first to blow.

 

“Mother, I want you, we all want you. Relax. You’re here now, and we’re all at home. This is our home. Please give us time to adjust.” I think of my own mother angst. I spent the first half of my life trying to get away from her and the second half trying to get back.

The cat walks by and rubs against her leg. I don’t know why that cat insists on cuddling up to the only person in the house who would like to throw it across the river. Mother pushes it away with her foot, gentler this time because she knows I’m watching. She looks disgusted. I try not to laugh.

“Go on now, scat!”

Great. Now I have to play referee between her, the kids and the pets.

 

 

 

 

For me, being an adult, a daughter, a wife, and a mother at the same time was challenging to say the least.

 

“We’re having to figure out how to stand next to one another in the kitchen, how to maneuver past each other in the hall, not just physically but even in our thoughts. No one fits every groove of our psyche, habits, or beliefs, and those knots and bumps rub us raw before we develop calluses. As hard as this is, I’m not in a hurry to get to the dying part. I want to face each day and glean whatever sweetness there may be, to truly be here, open my eyes wide and learn to stand next to her, neither one of us shoved to the side, each with a decent amount of space.”

 

 

 

 

I think women are particularly vulnerable into morphing into whatever and whoever someone needs them to be–to the point of losing a piece of themselves. We are the ultimate super-hero, we lose our identities in order to care for others.

 

 

Caregiving takes it even one step further. Your loved needs more. You are their protector, their provider. You are their lifeline.

 

My mother’s apartment was next to my kitchen and laundry room and was the parallel opposite to my bedroom.

 

I can remember evenings of helping my mother change into her gown, giving her the last of her medication, tucking her into bed, kissing her goodnight…and then walking through the kitchen and feeling myself “stripping” that caregiving/daughterly clothes and having to change into the next person I was to be–to help a daughter study for her SAT’s, or become a wife, my husband’s lover. All within moments…a new identity.

 

 

How do you keep your head and heart intact?

 

  • Believe you can do this. You were meant to do this–wife, mother, daughter, friend, co-worker. You have lots of experience already. Life never comes to us orderly. You have to be able to unload the dishwasher, talk to your best friend, pack your kid’s lunch, kiss your hubby goodbye for the day, and hand your mother a bowl of oatmeal–oh, and don’t forget to feed the cat.

 

  • Having your mother move in with you–or you with her–isn’t the worst thing in the world. Not having a mother is far worse. Yes, you’ll have a few squabbles, at least I hope you will. Your mother will teach your more about yourself than ten shrinks ever will.
  • Becoming your parent’s parent is the hardest, fastest, best way to really grow up. Whatever residual crap you had left over about your childhood (or adulthood) issues, you will finally either forgive or give up. It just gets too hard to stay angry and do everything else you’ve got to do.
  • Put yourself in your mother’s place. One day, you will–so take a moment to consider how vulnerable they feel. Their bossiness, negativeness, or fussiness is just a cover up. It helps to remember that it’s much easier to be the one in charge than the one in need.
  • Speak up. Set boundaries. Don’t give anyone–your kids, your husband, or your mother all your time and energy. Save some for you. Be alone every day–for ten minutes. I don’t care if you have to lock yourself in the closet, go to the mailbox and stand by it for ten minutes pretending to read the mail–be alone. Take long baths. Drink your coffee on the back porch. You do not have to be at anyone’s beck and call every second of the day. It’s not good for you. It’s not good for them.
  • If you don’t pray or meditate–start. You’ll need it. Find your center of strength. Ask for help, guidance, and wisdom.
  • You might not like it, but you’re probably a lot like your mother. The quicker you learn how to love her, the quicker you’ll love you.
  • Don’t let every little comment get to you. So what if she thinks you’re a slob, wear your shorts too short and can’t cook. There’s no better way to get over what people think of you than to practicce with your own relatives. Smile and be content with being just who, and just how you are.
  • Our minds, bodies and spirits are meant to love a lot of people. You can do it. You can find the patience and perserverance to do this. You will surprise yourself with how much you can love.
  • Caregiving is stressful, I won’t try to water it down in the least. You will have to be on your game almost all of the time. You will lose your cool, cry, curse, and at times, fall apart. But you are resilient. You will rebound.
  • This won’t last forever. I promise. It won’t. Parents die and kids grow up. My mother’s gone now–and what seemed like an eternity is now a memory. And I miss her.
  • Being a part of a family and caring for someone intimately is a priviledge. It’s messy, heartbreaking, hair tearing, and scary–but the alternative is orderly loneliness.

When it’s over, let go.

You will most likely grieve, feel secretly relieved, guilty, resentful, and scared all the way through and especially after it’s over. But this will pass. Your parent will become a part of you–in a cosmic, spiritual, and even on a biological level.

It will then be time to recreate who you are again.

Trust that all you need to know you already know.

You will find your way.

 

 

~Carol O’Dell

Family Advisor at Caring.com

Mothering Mother is available at Amazon

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Are you afraid you won’t be there when your loved one passes away?
Take a moment and be with them now. Close your eyes and talk to them.

A friend called me tonight. She was upset.

Her grandmother had a heart attack–and it doesn’t look good.

She’s afraid she won’t get there in time.

The holidays are a tough time to add grief and worry to the mix.

Not that there’s a good time for a loved  one to die, but it just doesn’t seem right when it’s the holidays.

This is supposed to be a happy time, right? A time for family.

If only disease and death were that courteous–to give us a few days a year of peace.

But unfortunately, it may come at a time when everything in you says, “no, no, no.”

I had a talk with my dad in the middle of the night. I had dreamed about him. I don’t even remember now what the dream was about.

He was having yet another heart surgery–and I woke up–the dream had been so vivid. So, I got up, and he and I had a talk.

Daddy didn’t die for another eight months, but this experience was so real, and ever since, I’ve been so grateful for that quiet time with just the two of us.

 

I listened and suggested that my friend take a few minutes alone and talk to her grandmother.

You can’t always control timing. You can’t always travel–so don’t wait to have that heart-to-heart talk.

Time, distance, disease, loss of memory, and even pain…our prayers, thoughts, and love can transcend all these barriers.

Don’t wait until you get there–planes and cars take time–the power of love is instantaneous.

 

If you’re in this situation, I hope you’ll take a few moments.

Tell them you love them.

Tell them it’s okay to let go now..

Tell them you’ll be okay.

If you need to, ask forgiveness–and accept forgiveness.

Thank them for who they are to you, what they mean to you.

Accept this experience into your heart. This is just as real as if you were to physically be in their presence.

Be at peace.

If your loved one passes away before you arrive, then you’ll have already said what you needed to say.

~Carol O’Dell

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

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