When Caregiving Takes Its Own Sweet Time, Pace Yourself for the Long Haul

I have the privilege of meeting many, many caregivers–and some of them have been at this for a long, long time. Some caregivers are caring for both parents, some a spouse with a chronic disease, others, an adult child who is disabled or challenged. These are the silent heroes. These are the quiet ones who have cared for others for years, even decades. How do they do it?

I’ve had many people say, “I couldn’t do what you did–care for your mom with Alzheimer’s.”

I didn’t know I could do it either. Most f the time, caregiving felt like I was the tin can tied to the back of a fast-moving car. But when I realized I might be doing this awhile, I knew I had to stop being drug behind and began to stand up and formulate a big of a plan.

As caregivers, we can’t always look ahead. We’re too overwhelmed with the here and now.

We can’t know what’s ahead either. Who would sign up for this? You do it because you love someone. You do it because you have a deep conviction that this is right and good. Many times you do it because no one else will.

But if you can take a moment from all the day-to-day responsibilities and take a look at the bigger picture (aka, your life!) Pacing yourself for the long haul is important. Caregiving is much like a marathon–it’s not that impressive to out in the lead at the beginning of the race. That’s easy. You have the energy and the enthusiasm to leap out of the gate. There’s that early exhilaration factor.

A marathon is a test of endurance. So is long-term caregiving. You get “over” trying to impress anybody. There are days you feel on your game–and many days you’d rather not talk about. You go through times of disillusionment, times of resentment, and then the good times roll back around again. You are reaffirmed. You’re needed, and you’re good at what you do. Confidence returns. You circle this mountain many times over.

Pacing Yourself Through Caregiving:

• Get off the drama bus. At first, everything’s a big deal–every ER visit, every “near-death” event. But after awhile you learn that you can’t exert that kind of emotional energy over and over. Learn to reserve yourself a bit–because it’s that reserve tank you’re going to need.
• Be something other than a caregiver. It’s so easy to lose your identity in a role–any role–mother, teacher, but you are so much more than what you do. Keep up something you started long ago–gardening, your membership in the DAR, renew your teacher’s certificate. Have a well-rounded opinion of yourself and realize that you bring all the aspects “you” to your caregiving role.
• Change is the name of the game. It’s easy to get comfortable with our routine, but as monotonous as caregiving looks, it’s not. Change is inevitable, and sadly, when we’re talking about disease and the aging process, our loved one’s health is most likely going to continue to deteriorate. By realizing this, you avoid becoming so rigid that you have a hard time adapting.

Pacing yourself isn’t always easy. It’s not like you can pick your times to take it easy. Sometimes you have to dig deep and exert all you have. And yes, much of your life may feel dictated to you, but the kind of pacing I’m talking about is more about your attitude, your flexibility, your overall perspective of life–you have to decide how you handle the challenges of caregiving–and of life.  

In the words of Abraham Lincoln, “Most people are about as happy as they makes up their minds to be.”

Why Does Alzheimer’s Effect People Differently?

Alzheimer’s does different things to different people.

I’ve heard some people say their spouse or parent got sweeter. “Not my mother,” I say in return, laughing (and almost crying at the same time) at some of the antics my mother and I lived through. My mother had Parkinson’s and later, developed Alzheimer’s. Double whammy. Writing about our daily escapades in Mothering Mother helped me deal with the stress.

Some people with Alzheimer’s are docile, too docile. They stop talking, and pretty much stop moving.
And honestly, as hurtful and difficult as it is to have a feisty Alzheimer’s loved one, my heart breaks for the family members who are left with so little because of this disease. There’s no communication. No love–or fight left in them.

For others, Alzheimer’s turns them into a fidget machine. They pace incessantly, talk, babble, rant, need next to no sleep, and when forced to sit, their knee jiggles non-stop. Others are paranoid and will lash out at anyone who tries to touch them–it’s as if their brain–and body–is on fire.

And yes, for some, Alzheimer’s turns their loved one mean, and violent. They curse when before the disease they were  practically saints. They use vile language that would shock and embarrass a fleet of sailors, and their eyes look as if they should already be in San Quentin. 

Violence is hard to understand, but for the most part, a person with any brain disorder feels threatened and that’s why they lash out. They may thrash, hit, try to bite if they feel cornered, they may scream at anyone who approaches them or cry as if they’re being tortured. 

It’s exhausting, heartbreaking and embarrassing–and yet care homes are full just because of this. Families throw up their hands. They don’t know what to do.

Alzeimer’s effects each brain differently. You  have to think of it as a chemical reaction, not a persoanl decision.

The dark truth is that for many, Alzheimer’s turns into an all-out rage. It’s unpredictable and unprovoked. They slap, bite, kick, pinch, and for a few, and surprisingly, they possess the power to break bones, knock someone down, grab knives, throw a lamp, and are truly dangerous.

Their families can’t handle it. Who could? Alzheimer’s patients can go on very little sleep or food. They need 24/7 supervision–and you need to know the staff (weekend, day, and night staff) well.

It’s crucial that you, the family member stays involved. It’s too easy to lose your temper or ignore their incessant cries–and only our love and committment keeps us going. As challenging and scary as it is, visit often and demand good care. 

If your loved one is starting to show signs of agression, I urge you to speak to your doctor now.

For some, an added medication that stabalizes their mood (and yes, it may make them lethargic) can curtail their violence. It doesn’t work with everyone, but if you catch it early, it just might work.

Don’t hide behind excuses. When they start gritting their teeth, knocking you away, pulling your hair, you have to get help.

Have you stopped having people over. Do you wear long sleeves to cover bruises? Are you afraid to go to sleep? You’re not alone, but don’t go it alone. Ask for help. There are people and organizations in your community that want to help you–and can help you.

I know you don’t want anyone to “see” your husband, your wife, your mom this way. You want to preserve their dignity. I felt those same feelings. I didn’t want to damage her good name. I didn’t want her to be remembered like this. But know that people are more understanding than you give them credit for–and the ones that don’t understand eventually will. Life has a way of teaching us the lessons we need to learn.

No one knows why Alzheimer’s effects people differently. Yes, it’s brain chemistry. Yes, it’s the way in which each brain deteriorates differently, but it’s also an interaction of personality, history, and family dynamics. We don’t get to choose.

The only way to get through late stage Alzheimer’s is with help. Ask for help. Call your local elder-source office. Call Alzheimer’s Association. Don’t go it alone. You don’t have to.

Creating Memorial Services with Heart, Part of the Caregiving Journey

Creating a meaningful memorial service for your loved one is cathartic, and you don’t have to wait until your loved one passes to begin to think about what they–and you–want and need.

It’s a part of caregiving you’d rather not thnk about, but it’s the last thing you can do to honor their wishes and gather everyone around to reminisce, consol each other, and share precious memories.

Planning funerals and/or memorial services takes time, and you’d rather spend those last few weeks and days your loved one has on earth at their side.

You may find that planning your loved one’s memorial service feels good in a way. It’s proacive. It’s exercising a little bit of control, and it feels good to honor the one you love. Don’t feel like you’re giving into death, and only do as much or as little as feels right to you.

Have you and your loved one talked about cremation or burial?

Even if you choose cremation, there are options. For some families, talking about this, even with the loved one who is dying is somehow relieving. It feels good (in a strange way) to make one last decision together.

Here are some tips to help you create a meaningful service:

If you choose to scatter your loved one’s ashes at sea, from an airplane or other location, then make a few calls. Depending on where you live, you may have to wait for this portion until later. There are also laws regarding this practice, and there are companies (charter boats, etc.) who can assist you with this.

One of the most beautiful services I’ve ever attended was on a sailboat with just a handful of loved ones. Someone played the guitar and his wife scattered his ashes behind the boat at sunset and his sister broke rose  petals on the water at the same time. It was truly touching.

• Decide if this is a somber/grieving occasion. It’s okay either way. Sometimes it’s just heartbreaking–our loved ones suffer before they pass, or it’s way too soon. It’s perfectly okay to gather to cry, hug, and hold each other.
• You can have a funeral type service soon after they die, and a memorial service months or even a year later–after the initial hurt and shock has worn off.
• For others, this is a sweet, playful time. Make it your own and reflective of your relationship. Hire an Irish band, do whatever is right for you.
• Know that you can’t please others. Don’t get caught up in this vortex. Don’t even listen to the snide comments–and trust me, there will be some. Your family and friends will just have to understand. Let them talk, if they must. This is one time when you need to follow your heart.
• Ask someone who needs a job to do to contact out of town relatives and friends and let them know that your loved one may be passing soon.
• If you do decide on more of a memorial/celebration type gathering, then let people know. Some families prefer people to wear colorful clothing, that joyful music will be played and people are encouraged to share humorous stories. It’s helpful to let people know this so that they respond properly.
• If you’d like to forego flowers, then begin to think of charities that people can donate to–but do some research and offer website or address info that can be placed on the program or sent by email.

There are no rules. Create a memorial service with heart. There’s nothing more healing than to celebrate your loved one, your life together, and all that they mean to you.

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

www.mothering-mother.com

• E-vites to the service is totally acceptable and a great way to contact people without trying to make a zillion calls. Again, a great job for someone who wants to help.
• Be aware that you may have a “dry run.” By that I mean that your loved one could rally around again. Don’t be surprised if this happens. After you let everyone know, get all sad, start to make arrangements–and then they seem to get better. (My mom did this and I felt kind of foolish). This is common, and in general don’t expect them to miraciously get better. This is often temporary, but of course no one can know for sure. All the work and prep you did can be put on hold and if you’re fortunate enough to have a few more days, hours, weeks, or months with your loved one–then of course, it’s a good thing.
• Many families and cultures have a dinner of sorts after the service. For some families, they like to get creative–I heard of one in Atlanta catered by the famous Varsity restaurant. The lady passing already planned and paid for it–and it was such a send off for her loved ones, and such a relief. Most people do something in someone’s home–a potluck. The point is, you get to choose–do anything you want. Cater it, serve deli sandwiches, serve filet mignon–doesn’t matter, just do what fits you and the occasion.
• Another special touch is to give attendees momentos–I heard of one funeral in which everyone received a baseball cap from the collection of hat’s the father left. What a better use of a collection that to share it with those he loved!
• Be aware that funeral/memorial services are people’s business, but it’s your time of grief. If you have a budget, then let them know up front that you have a maximum you will spend. Don’t get suckered in by allowing someone to use your emotions. While you want to make this special, you don’t want to pay for it for years to come.

Let people help, but don’t let them take over. You have the ace card, and if you need to be firm or difficult, you’ll be forgiven. You can’t possibly do all this alone. You’re going to have to let go of some of your perfectionist tendencies (and we all have them), and let others pitch in to make this day special.

State clearly what you and your loved one want, but then let others deal with the details. Creating a funeral or memorial service with meaning takes thought–and heart–and it’s part of the healing process of the caregiving journey.

Am I Holding Onto the Past? Why We Keep the Clothes of Those We Love

I’ve had my Daddy’s suede jacket hanging in my closet since 1982, the year he died.

I didn’t know I’d be a keeper, but I guess I am. 

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 saved 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,  my way of connecting. 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 and commented on how much my house had changed in the past couple of years. 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. I moved my mother and her 40 years not moving household items into my house during the last couple years of her life. I tried to talk her into getting rid of a few things but it was hard enough just to get her to consent to come with me.

My house bulged at the seams. 

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 enjoy new music. 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 feeling like I’ve accomplished something so I’ll write down something down I just thought of so I 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’m not avoiding “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 spare dresser 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 and they don’t take you or your house over. Grief and memory is no longer like a a giant box you left in the middle of the floor that you trip over again and again.

You still have a few momentos–a jacket, or a Bible.

Anytime you need to, you can slide open a draw and remember.   

But now, your closet and your heart is lighter. Airier. There’s room for something new. 

~Carol D. O’Dell, Author, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

www.mothering-mother.com

Caregivers: You Don’t Have to Like Your Mother to Love Her

Newsflash: You don’t have to like your mother to love her.

This, for some of us is a relief. We feel like bad sons or bad daughters if every thing’s not warm and fuzzy, but caregiving isn’t about your emotional barometer reading for the day.

It’s no coincidence that we start out tethered to our mothers. The umbilical cord is the first of many. It sustains us, feeds us, is a highway of blood. It’s tough too. I remember my husband cut our daughter’s umbilical cords and he said he really had to work at it.

And after all our mother-daughter ups and downs, we eventually find ourselves back together. Our moms need us–and we need them, even though we don’t know it or admit it. Caregiving comes along and gives us another chance to work at this ancient relationship. 

I have a friend I’ll call Jess, and she’s in her mid-thirties, and like most women that age, she’s already racked up a couple of decades of mother-daughter angst. It starts early for us girls. 

Jess shared with me that her mother recently asked, “Why were you always so angry with me?”

Now, that’s an age-old question…why are we?

Is it because of hormones? I’m sure.

Is it years of not being able to speak our minds? Absolutely.

Is it that our moms control our lives and even at a young age we want to yank the reigns and drive our own demons? Sure, but it’s even more than that. It’s biological, and it’s necessary–at least for some of us. I do know a few people who have always been sweetsy and close to their moms–and I mean always. I think they’re from another planet…

I finally got to a place of acceptance, but it took awhile.

But with Jess, I’ve noticed how things have begun to change. Jess is engaged. Jess is truly grown now, on her own financially and emotionally–and I think she, and her mom now recognize this fact.

Jess talks about her mom differently now. There’s no animosity. It’s simply gone as if somone had unhandcuffed her. Jess’s mother is flying in for her wedding shower and they’re going shopping all day at the outlet mall while she’s in town. She calls her mom several times a week as she’s driving home from work–just to chat. This wouldn’t have happened even three years ago. Her mom hasn’t changed. She still says certain annoying things any daughter would cringe at, but Jess no longer lets it get to her.

Why the change?

The mother-daughter bond is resilient.

It’s not a warm, cuddly blanket, but a sinuous cord that connects us and keeps our relationship alive through the turbulent years. At times, our anger is the jet fuel we need to grow up and move on with our lives. We “use” our mothers.

We hate them in order to love ourselves. We swear we will never be anything like them. We despise them when we don’t want to admit we despise ourselves. We lash out in words and actions knowing it cuts like a serrated knife. We think it will always be like this–us, way over here–them, way over there.

The resiliency of the mother-daughter relationship that grows stronger over time isn’t a surprise. Pennsylvania State University conducted a study of midlife daughters and their elderly mothers. Researcher Karen Fingerman, Ph.D., found that “despite conflicts and complicated emotions, the mother-daughter bond is so strong that 80 percent to 90 percent of women at midlife report good relationships with their mothers—though they wish it were better.”

After all those years of bickering, name calling, not calling at all, we find out that underneath all that bravado, there’s love. And…we actually want a better relationship with our mother! I never throught that day would come for me, but it did.

Suddenly, through birthing a daughter, a woman finds herself face to face not only with an infant, a little girl, a woman-to-be, but also with her own unresolved conflicts from the past and her hopes and dreams for the future…. As though experiencing an earthquake, mothers of daughters may find their lives shifted, their deep feelings unearthed, the balance struck in all relationships once again off kilter.

~Elizabeth Debold and Idelisse Malave

We are defined by our mothers and find our identities, in part, in them and their life-lessons. 

We push off of our mothers like they’re a springboard–the laws of physics at work in relationships. Our “you weren’t there for me’s,” and “why are you always so controlling” finally leave our systems and we get sick of our own whining. The longer we live, we see our mother’s strengths unfold. We view past events in a new light. We turn to them for guidance, even if it’s a “don’t do what I did.”

I love the mother-daughter relationship portrayed in the movie, Spanglish. Tea Leoni and Cloris Leachman are the daughter and mother, and both are a mess–but they’re together–through it all. There’s a scene in the movie when Tea is about to leave to go see her lover (she’s married) and her mother knows what she’s doing–and she tries to stop her. She’s standing by her car pleading with her–and I don’t remember the words–I don’t want to, but what I do remember is her actions. She finishes her sentence and with both hands on the window ledge, she slaps the ledge. Like, I’m done, I’ve said my peace. I know that gesture. I know that feeling of my mother speaking into my own life–having her say.

Our mothers can tell us things no one else can.

Were they bad mothers? Perhaps. At times. But that doesn’t diminish their power or our need to have them in our lives. Even if for a few, our mothers are object lessons, they are still in our lives for a purpose.

Eventually, most of us learn to make at least a measure of peace with mothers–and mothers with their daughters. It’s not a conscience thing. It just is. It’s biological.

Mothers and daughters can fight, argue, cry, blame, and complain–and their bond gets stronger. You don’t even know it’s happening–you think you’re a million miles away. We can even ignore our mothers and go on with our busy adult lives, and that bond is still there. Genetics is one powerful pull.

I’ve seen it countless times–family members who have been hurt find a way to forgive. Daughters who are disgusted with their mother’s choices begin to understand why, and through their own poor choices, they offer a morsel of mercy.

Mothers who seemed hard, controlling, and fussy finally become real people to their daughters. Their daughters begin to realize the that their mothers have lives, dreams, and quiet heartbreaks no one knows about. Mothers loosen up over time and become somone their daughter confides in.

Again, why?

You can’t make peace with yourself, with who you are, with all that you’ve done that had made you ‘you,” until you can begin to accept your mother, your past. She is your key.

What the daughter does, the mother did.  ~Jewish Proverb

Our mothers, our daughters define us. We are who we are because of them–good or bad. We look into their faces and we see ourselves–past and future.

Caregiving comes at just the right time. We don’t think it is. We’re busy. We’re moms, and just got our act together. We don’t want to deal with death and dying, with power struggles and forgiveness. But oh, we do and we just don’t know it. Begrudgingly (sometimes) we lay down our grievances and come toether–again. 

Caregiving gives us a reason to make up, to let go, to “get over it.”

Whether our relationship is strained or easy, hostile or amiable, we need our mother if only in memory …
to conjugate our history, validate our femaleness and guide our way.

~Victoria Secunda

Something happens when our mothers lives begin to grow smaller either physically, emotionally, or financially–a power shift occurs.

We (the daughters) gain strength and power–and this time to “be on top,” allows us to feel less threatened–and when we’re not threatened–we can be generous with our love.

Eventually, the scales balance.

After years of our mother’s having dominance over our lives (the childhood years), we’ve built up resentment, and finally, as time rolls along, we come into our own, we tower above our mothers for a short time, and that isn’t as fun as it sounds. If we’re lucky, and our mothers live a little longer, we become equal bookends, each of us strong in the broken places and worthy of respect.

And then, just when we make peace, our mothers die. It surprises us. It shocks us. This is too soon, we cry. We just got here, to this place of acceptance, to the point to where we can sit in the same room and breathe the same oxygen. We realize how ironically close we really were–all along–even when we thought we weren’t. We love our mothers in a deep-bone way.

We lose ourselves in grief. We just found ourselves in and through and mothers, and then they leave us. We feel abandoned, lost, maybe even angry. But don’t worry, all that we’ve gained grows inside us.

Looking back, I realize I’ve lost two mothers four times.

My birth mother had schizophrenia and I was taken from her as an infant when the voices told her to hurt herself and her children. I lost her again when I was adopted at the age of four. I didn’t know it would be forever. I lost her again when I was 23, and found my birth family only for them to tell me that my mother was dead–she had died one year before I found them. I cried that day, that week, that year–I cried for the mother I would never know.

I lost my adoptive mother to Alzheimer’s before death took her. To look into the face of someone you know so well–someone who you’ve screamed at, cried and fought with, only to have a disease eat away at her brain like battery acid–and to know that she doesn’t know you, remember you, you hold no emotion, no connection. You might as well we a cardboard box. It ravages your soul and all you believe.

And then death came. In a way, a welcome relief to the heartbreak of Alzheimer’s. I knew it would never give me my mother back.

Why now? Why do we lose our mothers just at the point when we can sit beside them and feel at ease, a give and take? Just when we can be ourselves in the presence of our most formidable foes, our most dependable ally, we lose them.

The woman who bore me is no longer alive, but I seem to be her daughter in increasingly profound ways.  ~Johnnetta Betsch Cole

I have no answer for this. The only solace I can give you is that my mother’s life is now my example, her stories, her “ways” ripple through my own life. I don’t idolize her or think she was perfect. That would be an insult to such a great woman. I see her as complex and confounding as ever–but that’s what I like about her, about me.

In a bigger sense, I haven’t lost her, or lost me. We sit side-by-side. Equals. I hear her so much more clearly these days. I feel her respect. I listen.

And now, I have three grown daughters. The torch has been passed. They rail against me at times. I let them. I know the journey they must take to get to their own place of acceptance and strength. I’ll be here. Waiting.

I’m Carol D. O’Dell, the author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon.

Caregiver: Do You Need a Fresh Outlook on Life?

Let’s face it: Caregiving can get ugly, and I do mean that in a literal sense! (Smile)

Have you let yourself go a bit? Do you need a fresh outlook? Physically and emotionally?

There were times when I was my mom’s full-time caregiver (my mom had Parkinson’s and Alzheimer’s) when I’d go days without looking in the mirror. On purpose.

Yes, I was busy, tired, overwhelmed–and that lead me to feeling frumpy, puffy, and in a rut–and then I used that to go into denial and avoidance.

I told myself I had more important things to do, but it doesn’t have to be an either-or situation. 

It’s good to forget about yourself for awhile. It’s good to give of yourself, even to push yourself to the edge. Sometimes you just have to in times of stress and grief.  

Generosity, patience, and tenderness gives you a glow no money can buy.

And face it, you can let yourself go to the point to where you don’ t feel good about yourself. 

I gained close to 40 pounds during my two+years at a full-time caregiver.

I don’t blame my mom for this. Honest. I take full accountability. I could have put down the bags of Oreos and Fritos. (Notice how all tasty snacks tend to end in O’s? I could have walked more.

Even with my mom and kids and a big house to manage, I could have gone for two fifteen minute walks a day and eaten more veggie soup. No one was forcing sugar down my throat.

Yeah, I was tired, frazzled, and distracted–it comes with the territory–but I used that as an excuse not to pay attention. I’m just saying I contributed to own “junk in the trunk.”

It also helps to lighten things up a bit (metaphorically speaking) and think about haircuts, color, make-up and clothing takes the emphasis off the heavier aspects of life. Being able to feel good about yourself, to smile with confidence with a spring in your step helps not only you, but your loved one.

Being serious all the time isn’t good for you. It doesn’t mean you’re a better caregiver, and your loved one would probably enjoy your company more if you feel good about yourself.

Depression doesn’t like color, light, and laughter–so let’s flood the room!

Now you’ve seen the light (aka seen yourself with the lights on!) and you’re ready to do something about it, I’ve got a few simple suggestions.

First, don’t make it hard, but let’s stage your comeback and surprise your loved ones with a fresh outlook.

 Easy Solutions for a Fresh Look: (for the ladies)

• Fixate on your health, not your weight. Take it from Queen Latifah, the new spokesperson from Jenny Craig. She’s not trying to become America’s Next Top Model. She loves her curves. Love yours–and focus on your health not your flab. We all have flab.
• Nix the elastic waist pants. Why? They’re comfy, I know, but it’s too easy to keep on snackin’ when you’re not feeling a pinch in your side. Put on real pants. Even if you have to go up a size. Beauty is not a size, it’s a state of mind.
• Set very small goals. Walk ten minutes twice a day. Stretch–even encourage your elder/loved one to do some simple stretches with you. Don’t bring home the snacks. If you must, get a snack pack at the gas station–one of those bags for 99 cents. Eat them and throw the bag away. Don’t worry about the money–the economical size bag will cost you more in the long run (health, Weight Watcher’sfees, cholesterol meds).
• Get your Vitamin D–and how? By heading out the door for those ten minute walks! That’s all it takes. And your elder needs their Vitamin D., so at least have them sit on the porch for a few minutes per day. There are supplements, too, and recommended for elders. 
• Go look in your closet. Anything that’s been in there for more than five years–toss it now! I mean it! Go to it. It doesn’t matter if it’s the dress you wore to your daughter’s wedding or your 25th anniversary. Come on, let it go. Guys–this is for you, too. Even three years is long enough. You’re not a museum–you’re a living work of art!
• Now, match up three outfits that look nice that you could wear every day. Stop waiting for an excuse to dress up. Dress up for yourself. You deserve it–and your loved one deserves to look at a person who takes pride in their appearance. I know you’re tired and you think this doesn’t matter. It does. No high heels, but a nice pair of jeans or slacks, a decent shirt that’s not all stretched out and something that has some nice color. Spritz with some perfume and comb your hair. You’ll feel better.
• Plan a daily tea time. Crazy, I know. It’s English, so pretend you’re English. Choose a time–say, 4:00, and set out a cup for the two of you. Have tea and two cookies. Just two. You can even say it’s medicinal–all tea is good for you, but go for a green tea variety and get your antioxidants. Sit out on that porch to get your vitamin D., or sit in the living room. Chat for ten minutes and sip tea. Your loved one will feel special, and you’ll begin to relax. It’s just a simple tradition, but it’s soothing–and something to look forward to.

Ladies, if you’re ready for a real comeback, have I got a book for you!

Staging Your Comeback by Christopher Hopkins is for real women over 45–primarily focusing on women in their 50s and 60s is really amazing. It isn’t downgrading or patronizing. He’s been featured on Oprah and Today Show, and he isn’t your run of the mill “I’ll make you look 20″ kind of salesman.

There are lots of pics and the most astounding before and after photos you will see. My 21 year-old daughter was with me at Target when I bought the book, and even she was amazed. (I heard the make-up in the book is heavier than he would normally recommend and was only done that way for the book).

 The book is designed to be interactive with his website that has downloadble worksheets to help you plan your comeback. 

Is all this frivolous? I don’t think so.

We have to balance out all we’re dealing with–disease and death are not the only things in life.

We need balance. We need hope. We need to relax and enjoy our one wild and precious life, as the poet Mary Oliver would say.

I’m Carol O’Dell–come visit again soon!

Carol is the author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

Her website is www.mothering-mother.com

Have You Taken Caregiving Too Far For Your Own Good?

I was recently at an event where a woman received the caregiver of the year award for her community.

Her daughter wrote a lovely letter about all her mother did for her mother.

The list started at about 5am and ended about midnight–with frequent middle of the night interruptions as well. The list went on and on. Daily baths, attention paid to her mother’s nails, lotions, pulling chin hairs…on and on and on. She got a standing ovation, but my heart ached for her. She was in her early 50s and looked in her late 70s. She was smiling but looked as if life had beat her with a crowbar.

It sounds vailiant. And it is, in some ways, but caregiving can be taken to the max–it isn’t so good for you–or even your care receiver.

You have to give your loved ones their daily medication.

You have to take them to the doctors.

You have to bathe and them and change their clothes.

Right?

And yes–you do. But are you caregiving too well?

What do I mean?

You can become obsessed with caregiivng and use it to avoid other aspects of your own life.

You can ruin your health and your relationships on this noble “holy grail.”

I’m a big proponent of family caregiving, but some cultures are so tightly bound to a sense of duty that people (particularly women) have few options and caregiving becomes a noose that’s winds up snuffing out lives and dreams. 

And let’s face it, we bring our entire family history into our caregiving roles. OUr past experiences are like a bowl full of fish hooks–you can’t pull up just one without getting a whole mess of them.

Was your mother/father/spouse controlling?

Did you feel as if you could never totally please them?

Carol Bradley Bursack who writes a great blog at www.MindingOurElders.com reminded me that deep down we (all of us whether we consider ourselves obsessive-compulsive or not) struggle to achieve our parents love. We try to “earn” their blessing when in truth, we need to give ourselves our own deep sense of love, mercy, and acceptance.

No one can ever give to you what you need to give to yourself.

You can use caregiving:

to avoid your marriage

your health

your financial setbacks

your relationships with your own children or relatives.

You can use caregiving and family duties to avoid:

going to work, building a career

returning to school

or finding a mate

You husband or wife, mother or father can become your “living doll.”

Don’t be embarrassed. It’s easy to do.

You may even have a natural propensity toward being a nurturer, and you’ve become “good” at caring. Too good. (This applies to men and women–men like to feel needed too). Being a parents for 20+ years–or not having the opportunity to parents can also contribute to a deep sense of needing to be needed, to belong and connect, to be good at something.

How do you know if you’re obsessed with caregiving?

• Your caregiving duties continue to increase–more baths, more attention to detail.
• You tell yourself it’s necessary, but others seem to question you.
• You are an expert in your loved one’s illness but are ignoring your own body’s warning signs.
• You haven’t taken a day off in months.
• Your other relationships are dwindling.
• You feel as if you have nothing in common with the outside world.
• You constantly think, “they don’t understand.”
• You take a deep sense of pride when someone says you’re a great daughter/son/caregiver–and you actually try to create situations (subconsciously) where someone would be prompted to say this.
• You never sit down because there’s always something to do.
• You’re getting less than 5-6 hours sleep a night on a regular basis.
• You fear when your loved one dies and almost feel frantic at the thought of wide open days with no one to pick up after, watch, feed, or medicate.

I know, this just sounds like normal caregiving! What’s the difference?

It’s more about intensity, urgency, and an underlying, almost imperceptible sense of fear–you’ll be found out, your loved one will “die on your watch,” they’ll take your mom from you, you’ll have to put her “in one of those places.”

***

What’s your unsaid driving force?

Fill in the blank…”I’m afraid that if I don’t ________, that __________will happen–and it’ll be my fault.”

*****

Now, be rational. Talk to yourself as if you were your best friend. Is this really true? Wouldn’t you (your best friend you) cut you a little slack?

There were times when I did get this sort of sick sense of pride that I was the “best caregiver in the world,” while underneath I felt like a sham–and in reality I felt like I never could do enough. I never could “fix” or manage my life.

Alzheimer’s really does a number on you–you feel like you owe it to your loved one to do everything you can for them–that this is such a horrible, horrific disease that you want to counter it in some way, but you can’t.

I had many arguments: ”If I’m going to do something, I might as well do it well. This is where God wants me and needs me. She’s my mother–and wasn’t this the right thing to do? Any of these sound familiar?

I couldn’t help it that my caregiving duties never ended.

I also know there are some of you out there who say you’re a perfectionist–you can’t stand a mess. You can’t relax until everything done and cleaned up.

Really? If that were the case, then I could never relax because I’m not sure I’ve ever been “caught up” even once in my entire life?

It’s funny that we call that being a perfectionist.

I’ve changed that word in my mind to mean something different.

A perfectionist sees the “perfect” and the good in everyone and everything that sounds me.

I came across this mindset in a book by life coach and inspirational speaker, Allen Cohen.

This is who I choose to be–and how I choose to see the world. (It’s a work in progress and a daily, moment to moment choice).

Sometimes you just have to let the chaos rule!

No, an adult doesn’t have to have a full bath every day.

It’s okay to have a frozen meal, pizza, or eggs for dinner.

It’s okay if your there are dishes in your sink when you go to bed at night.

It’s okay to take a day–or (gasp) a weekend off and arrange for respite care.

It’s okay to sign up for a class once a week.

It’s okay to call and invite a friend to lunch.

It’s okay if you don’t take your loved one to follow up doctor appointments–just for a recheck.

It’s okay to notice that there are areas of caregiving that you might have taken too far.

Laugh! Take a deep breath, and make a new choice. Find the perfect in the imperfect.

You won’t be able to turn off your caregiving gene, but with some forethought, you can learn to balance out the needs of your loved one–and still find time to build a life outside of caregiving. You will begin to value the few moments you give yourself and look forward to taking a class, or even taking a walk.

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

Caregiver, Are You Too Hard on Yourself?

A Caregiver’s Challenge: Loving the Unlovable

Dad Won’t Quit Pacing! What You Need to Know About Agitation and Alzheimer’s

Alzheimer’s usually strikes when someone is older–a time in their life when people typically slow down.

Many Alzheimer’s live on the edge–always anxious, overly alert, agitated, and sometimes mean.

A common sight in a memory disorder unit, facility, or center (they can be called different names) is to see a person walking and walking. Pacing like a caged cougar.

They never sit. They have a wild look in their eye.

Only when you see several Alzheimer’s/dementia/Lewy Body (a Parkinson’s form of dementia) all together do you realize that your loved one isn’t the only one who does this–that it must be the effect of Alzheimer’s on the brain and nervous system.

It’s exhausting to watch and even more exhausting to keep up with.

It can cause them to wander–try to slip out–and if they do, get lost.

That’s a caregiver’s worst nightmare–their loved one out side of safety, vulnerable to everything and everyone from being hit by a car, lost in the woods, or god forbid–hurt by someone cruel.

Why can’t people with dementia or Alzheimer’s seem to settle down and relax?

Agitation is one of the challeges of Alzheimer’s behavour.

Agitation and other behavoiral changes are caused by the changes in the brain–the brain is in many ways, shrinking. The delicate pistons that fire the synapse is not always firing or hitting the intended area or “target.” This can cause all kind of sensations–a person can become sensitive to sound or light or texure–they can crave it or recoil from it. There can sometimes be hallucinations, delusions, (especially with Lewy Body–which usually includes more of a shuffled walk)

A person with advanced Alzheimer’s can forget how to talk and only babble.

Many things can happen in our brains, which means Alzheimer’s will effect people differently.

What do you do if your spouse/parent/loved one paces/walks incessantly?

• If the person with Alzheimer’s becomes anxious or If it’s safe, let them walk. I know you think they’re old, their knees are in bad shape, and how can they keep doing this? It’s a need, a drive–and at this stage of the game, their knees can’t be your primary concern. Let them walk.
• Listen to the person’s frustration. Does it make sense? Can you help in some way? Does the cat bother them–or the red planter in the window? If there’s something that’s irratating them–no matter how odd–and you can move it, then move it.
• Reassure the person. Use calming phrases and let the person know you’re there for them but also realize this may not comfort them at all. Do the best you can. Know when to be firm. Say it in a kind way, but if they’re trying to get out the door, then you will have to distract and be firm–for their own safety.
• Many people (men and women) respond better to a male voice. They perceive it as the voice of authority, so consider using a lower, clearer tone–or finding a male to impersonate Barry White for you!
• Don’t use so many words when giving direction. Be clear. 2-3 words are enough. “Sit in this chair.” “Time to eat.” Don’t yell or startle them even when it seems like it is needed. It usually doesn’t work and will only make things work. You can firmly state, “NO.” Use your strong voice, not a yelling panic voice.
• Even those with brain disorders can pick up on fear or anger–it’s contagious!
• Involve the person in activities. Use art, music or touch to help the person relax. This isn’t patronizing even though it feels like pre-school. Music therapy really does work and has been documented to sooth those who are agitated. 
• Modify the environment. Decrease noise and distractions or move to another place.  Just as with a young child, you baby proof your cabins and put up baby gates to keep them from falling down the stairs. This isn’t treating your elder with disrespect. This is to make them safe.
• Keep a look out for new possible hazards. It’s amazing the trouble one person with Alzheimer’s can get into!
• Find outlets for the person’s energy. Have you been outsidein the last few days? Gone for a car ride? If this is no longer possible, then have you opened the windows? Aired out the place? Can you play ball or fold towels? Some people really need that tactile sensation. Some women like dolls. Some people respond to a small dog–for others it would be a danger (for the dog, I mean ). Can you keep a Tupperware drawer and create “jobs” for them of loading and unloading?
• Keep a sense of humor. It’s just the brain gone kaflooey. Your loved one isn’t trying to mean (most of the time) or drive you crazy (most of the time).
• If you find your patience is gone for the day, then maybe you need to go as well. Just because your loved one can’t take a walk doesn’t mean you can’t.

If you’re dealing with the later stages of Alzheimer’s, dementia and memory loss, then know that you are dealing with a massive amount of stress.

Most professionals burn out at this point, and in many memory loss units, some are advised to only work three days a week so that the stress doesn’t hurt them or ripple out to the patients and their families.

You have got to de-stress! Even if you just visit your loved one, you have to let it go after the visit.

You know how you have to go through decontamination if you are exposed to radioactive material? Visualize that.  Walk, cry, scream, eat–don’t forget to eat–but if you’re food cramming (stress eating in other words) then forbid anyone to bring Oreos or Doritios or whatever triggers you.

You’re in a more stressful job than air traffic control. Treat your body and your heart with tenderness during this very difficult time. Don’t expect to be on an even keel. Expect to cry, feel numb, zone out, not be able to talk about your experience–this is profound, and while that sounds terrible, it’s not. You can do this and do it with love and compassion. Your loved one needs you to watch over them.

Also know that this is the stage where many of our loved ones have to placed in a facility–for their safety and yours–because their needs are more than you and your team/community can manage.
It’s okay if this happens. You’ve done all you can. Say thank you for the help, for the option. Let them take some of the load. Find the best place you can. Visit often. Be vigilant and watch over your loved one–but know that it’s time to begin to let go. It’s time to allow others to help.

• Stay calm and be understanding. • Be patient and flexible
• Look for reasons for each particular
• Respond to the emotion, not the behavior
• Don’t argue or try to convince
• Acknowledge requests and respond to them
• Accept the behavior as a reality of the disease and try to work through it

It’s also important to prepare other family members before they visit.
Alzheimer’s can be very disturbing if you’re not familiar with the “quirks” that come with it. By talking about it ahead of time, letting the person know what they’ll see or how they’ll be talked to or treated–and how to react–will help immensely.

CNA’s and other elder-health professionals get training in dealing with Alzheimer’s behaviour, but sadly most family caregivers don’t. They have to figure it out for themselves. Many loved ones are placed in a care facility prematurely (or too late) because we simply don’t know what to say or do.

Alzheimer’s is kind of like the wizard in the Wizard of Oz. Once you go behind the curtain–begin to analyze what’s happening, why, and have tools and coping mechanisms–it’s not so intimidating.

These are still our loved ones.

Trapped inside every feeble or rigid body, behind every frozen face or babbling talk, is someone’s mom, dad, husband or wife.

Please visit this blog again!

Carol is the author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir. It’s available on Amazon and in bookstores.

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