Are You the Black Sheep Sibling? The Unlikely Caregiver?

Life is funny. Sometimes the most rebellious of us, the teen gone bad, the unwed mother of three, the Harley brother in leather and bandanas  and lots of tattoos who become the best caregiver, the most thoughtful son–or daughter.

Why? Sometimes those who travel counter to society have the most tender souls. Sometimes the battle with their personal demons have made them even more thoughtful, more real and more alive. They may wrap the package in a prickly covering, but that doesn’t mean there’s not a teddy bear underneath.

Our lives are like boomerangs. For some of us, we fling ourselves as long and as hard as we can from our families–and our trajectory runs its course. We go to the bitter edge, turn, and with the same intensity we find our way back home again.

That doesn’t mean that if you’re the black sheep that you have to cut your hair, cover your tats, and clean up your language in order to be a good caregiver. Be yourself! What a refreshing idea. What you have to give to your loved one–your life experience, your way of looking at the world–is unique and of value.

And if you don’t already know it, black sheep have incredible charisma. It’s your charm, your edginess, your dangerous elements that make you such a great care person.

I do think that most of us get more forgiving as we age. We get tired of being angry at everybody and everything. We get tired of our own spiel. We realize we don’t know everything and all that we’ve been hiding and running from was ironically trying to teach us a thing or two. If your family didn’t used to accept you, it doesn’t mean they still won’t. And if your mom or dad or sister or brother need you, and you need them–be willing to knock on the door. 

Alzheimer’s and other diseases that ravage our bodies are great levelers. When it hits and your loved one needs help, it won’t matter if you’re wearing cowboy boots or Birkenstocks. Don’t let others keep you away. Don’t let your past keep you away. You deserve to be there. They deserve to have you there in those final years, months, and hours.

So what if you don’t look like, talk like or think like the other sons and daughters in the waiting room. Maybe that’s a good thing.  Some of the kindest, most attentive, most present caregivers I know come in the most unlikely of packages.

~Carol O’Dell

Author of Mothering Mother

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.

Celebrating Mother’s Day When Mom’s Gone, Turn Bitter Into Sweet

Mother’s Day ican be bitter-sweet if your mom’s no longer here.

It’s so hard to say the word, “dead,” and in many ways, our loved ones live on–in thoughts, in stories, in how they continue to impact our lives.

For many, Mother’s Day can be so painful that we do all we can to avoid it. That avoidance is part of grief, and it’s necessary for a while. Grief is like a good soldier, but there comes a time when you say “Thank you, you’ve served me well,” and you let that soldier be released from duty. 

After my mother died from Alzheimer’s and Parkinson’s, I felt incredibly lost. I had been her daughter and her caregiver for so long and had invested so much time, energy, and heart into that role. After months, if not years of longing for my freedom, of griping and complaining, all of it felt so trivial in comparison to my mother no longer being in my life.

I knew I had to get my bearings. I asked myself over and over, ”Who am I? What was I doing before caregiving? Do I go back to that–or move onto something else? I’m now the matriarch of the family…does that mean I’m…old?: I’m now the Mama figure, the one everyone turns to, the one who holds the family history.

Feeling lost lasted awhile, but it didn’t last forever. I began to move beyond my grief. I began to grow hungry for life, for a routine, for something to sink my mind into. I returned to college. Someone else telling me what to do seemed to work. I started writing again.

An Excerpt from Mothering Mother:

I put Mother’s wallet and glasses in the top drawer of my dresser today. They’ve been sitting on top of it since she died four months ago. Mother kept Daddy’s wallet, pocketknife, comb, and a small Bible in a heart-shaped cedar box he gave her the second time they went on a date in 1925.  Something about these wallets left intact creates a sort of bubble holding time and memory in perfect stillness. Their licenses, credit cards, photos and slips of paper remind me that they had everyday lives.

This makes me question this whole “here, not here” mindset we have. Giving a friend a bit of humorous advice prefaced with “as my Mama always said…” is a way of keeping her here. Will there always be a bitter side of sweet?  Will death and dying burn away, so that I don’t have to run straight into them before retrieving a remembrance?

I hear Mother all the time and quote her daily. My friend Debbie’s teenage daughter asked her mother, “Don’t you trust me?” The age-old question every parent is eventually asked, the question we all secretly know the answer to. My southern mother answered that question when I asked it two decades ago, “ Honey, I don’t trust myself in the dark.” Hearing her words echo in my head was somehow comforting.

Perhaps this is your first Mother’s Day without your mom. If it is, be easy on yourself. This can be a tough day. I know I didn’t want a lot of fuss. I needed a hug and a card, and then I needed it to not be Mother’s Day anymore.

But in time, the bitter painful part subsided a bit, and I began to remember the good times, the funny times, the crazy-chaotic mother-daughter moments that made us pair. I could talk about her again. I could tell a story and then smile.

It takes time.

~Carol D. O’Dell

“Honey, Grandma Died” Talking to Your Children About Tough Issues

It’s so, so hard to have to tell your son or daughter that their grandfather, grandmother, or parent has died. We dread it so much that we avoid it, but this is a time when our children need us to most. They need us to be clear. They need us to answer their questions.

How Do You Tell a Child That a Loved One Has Died?

Keep it simple. Use “died”, not “He is sleeping.”

Allow your child to express raw feelings freely or ask questions.

Answer questions honestly and simply. Do not go into detail, unless asked.

If the death was due to a violent crime, explain that they are safe now, nd you will do all you can to make sure they stay safe. 

Offer a comfort object–blanket, doll, teddy bear. Even if they’re “older,” something cuddly can reduce anxiety.

If the body is suitable for viewing, allow the child to see your deceased loved one, if requested. Prepare the child for what he or she will see.

Tell your child what will be happening in the next few days.

Give your child choices in what to do. Some children want to go to school the day of the death–it’s comforting and feels “normal.” Give them a choice. Whenever they return, inform the school of the death before your child returns.This makes their teachers and classmates more sensitive. Most schools have a school counselor that can also assist and be made aware of the situation.

Reassure your child that he or she will be cared for and explain the plan.

Children sometimes open up easier if they’re doing something with their hands–playing cars or helping bake cookies–it can take awhile for them to feel safe–and they feel less on the spot if they don’t have to look at you but can pretend to be “busy” with their hands.

In the United States, approximately 4.8 million children under 18

are grieving the death loss of a parent.

 Don’t Know How to Talk To Your Child: Here’s some Easy Conversation Starters: 

 I’m sorry your grandmother/papa/mom/dad/sister died.

 What was your dad/mom/brother like?

 Tell me about your__________. 

 What was his favorite food/book/thing you did together?

 What do you miss the most? What is the hardest time of day for you? 

I cannot know how you feel, but I remember how I felt when my __________ died.

 Whenever you want to talk about it, I’m here.

 I’m thinking about you especially today because I’m aware that today is your mother’s birthday (anniversary of the death, your birthday, etc). 

 If you don’t want to talk, we can still spend time together.

Words That Can Hurt: 

“I know just how you feel: (Do you? Everyone’s sorrow is different. “You’ll get over it. It will be okay. Don’t think about it.” “Don’t cry. It’s not your fault.” ”God took him so he wouldn’t be in pain.” “Tears won’t bring her back. Be strong.” “Forget about it. You are the man/woman of the house now.” “You should feel: ….(proud, relieved, happy, sad, etc.)

Children May Express Grief Differently Than Adults:

Children have even a greater capacity to push away painful thoughts. Their emotions may experience highs and lows. They may laugh inappropriately–even at the memorial service. Don’t think this is because they don’t care. It’s difficult for a child to figure out how to handle their emotions. They may avoid sleep–or a teen may sleep all the time. They may zone out and not seem to hear anyone talking to them. 

They may become clingy or panic if you’re not home on time or don’t pick them up on time. They may act rough or violent toward a sibling or friend. Defiantly disobey. Teens may become daredevils–drive fast, extreme sports, breaking and entering–anything to feel “alive”

They may even try to “test” your love.

When Do You Seek Professional Help?

When the symptoms (lack of sleep, depression, aggression) continue for weeks or months and grow in intensity.

When they can no longer function in school or around other people

When they isolate themselves for too long

When they become dangerous to themselves or others

They fixate on death, experiment on animals, or are exhibiting cruel behavior

What do you do if you suspect your child or teen is not handling grief well?

Talk to the school counselor, your pediatrician, or clergy

Get a recommendation for a therapist who has helped children through grief.

Don’t settle for just a prescription. Talking and expressing their emotions is crucial to the healing process.

Don’t go just one or two times and think your child is “better.” Follow through and be consistent.

The Best Advice?

Be patient. Expect some some highs and lows. Share your own grief journey. Listen. Reassure. Be there. Provide help if or when it’s needed. Let them know it’s okay not to be able to handle this all by yourself–we all need each other. Be understanding of yourself. You’re grieving too.

Carol O’Dell

Author, Mothering Mother

Helpful sites:

www.opentohopefoundation.com

www.childrensgriefnet.org

www.kidsaid.com

Are You Dreading the Death Date of a Loved One?

No matter how much you try not to think about it, you dread the day your loved one died. It’s especially hard, those first couple of anniversaries. Perhaps you spent years caregiving and you’re dealing with the void in your life. Perhaps it was sudden and you feel as if the bottom fell out of your life. It feels as if you’re going to get physically ill, dreading this day.

Even years later, a dear friend of mine wonders what’s wrong with her come late May, early June. I remind her that’s when her father died. He commited suicide and took the life of her step mother as well. No wonder everything in her repels this awful day. Who would want to remember? Once I remind her, she can relax. Her anxiety has a reason for being there, and that fact alone is ironically comforting.

My friend has learned to let grief wash over her. Once she recognizes it, she lets it be a part of her again. She knows it will pass, but she also knows that fighting it will only make it worse.

But your body does whether you do or not. Our bodies have “muscle memory.” Just like poison ivy, grief and sorrow gets in your system and comes full circle the time of year your loved one died. You have to give into the grief.

How do you get through that death date?

Everyone has a different way of dealing, so find what works for you. Here are few suggestions to consider.

Instead of avoiding, give in. Have a day to cry, to grieve, to remember your loss. Write your loved one a letter. Write them a angry letter if you need to. Perhaps you’ve put off facing the fact that you are angry and hurt. Maybe not at them, but that they left you with so much to deal with. Maybe you are furious with them, some left over business. So be furious. Write that letter. Stay home that day and yell at them and finally have it out.

Trust your gut. Whatever you need to do, do it.

For others, it’s a bittersweet time. Get out those photos and say goodbye all over again. The day your loved one died or the day of their funeral or memorial service may have been such a shock that you were out of it. You could have been so nervouc, so zoned out, so medicated that you didn’t “feel” your grief the first time around. So do it again. Have you day to say goodbye. Visit the memorial gardens or place you spread their ashes–or create a new place for you to go. Make “right” on saying goodbye to your loved one.

Or maybe you need to avoid. Running feels right, and I won’t tell you not to. Eventually, yes, you’ll have to face all this–but you’ll know when. It may hit you one day and you can no longer avoid upir sorrow. Until then, do what you have to do. Yes, it’s healing to face our grief, but we’re all on different times.

Death dates get easier. Maybe not sequentially–you might have good anniversarie and bad anniversaries. But you will come to a place where you can breathe again.

~Carol O’Dell

Author of Mothering Mother

Does Caregiving Stress Your Marriage? Grow Closer in Your Caregiving Years

Is caregiving hard on a marriage? It can be. But it can also be a wake-up call. Sometimes our  marriage can be defined by what we’ve survived. Yes, caregiving was stressul on marriage–at times. I wrote in my book, Mothering Mother that I felt like I was a giant ice cream milkshake and each of my family member had a straw–and they were all sucking on that straw trying to get more of me. At times, one would pick up the glass and tap the side, or another would dig deep with the spoon trying to get the last drop.

That’s what it felt like–that I there wasn’t enough of me to go around. Sandwich generation moms really feel this struggle. But looking back, I also see what a rich and textured time it was in my life. Being needed is a good thing. Feeling “cushioned” or sandwiched on both sides can also be comforting and defining.

Did my marriage suffer? Yes, at times. It’s difficult to know how to juggle everything.

My husband got the worst of me. He got the sleep deprived, always griping about something, not very romantic or considerate–me. He knew when I came to bed, I might have to get back up in 30 minutes, and maybe even 3 or 4 times that night. He knew that if my mom had a particularly rough night that he’d “pay” the next night–with a frozen pizza for dinner, or he’d pitch in, do the dishes or take the girls to an activity while I sat zombie-fied on the couch.

But we made it through. He was patient. Understanding. Tolerant. I’m sure at times, I made it harder than I needed to by complaining. We create a lot of our own troubles. He’d hold me in the shower and just let me cry. My mom’s Alzheimer’s was hard–physically and emotionally. He’d wash my hair and towel dry me and I would still be crying. He’d pick my mom up when she fell out of bed or was yelling that someone broke into her room. He was firm when I needed him to be, kind when he needed to be.

Make Caregiving Easier on Your Marriage:

• Be a team. Don’t make each other the enemy. Stay on the same team. Tag team, take turns, help each other out.
• Don’t both of you be down at the same time. It’s pretty natural that if your hubby has a bad day at work, you make him a cool drink, you listen, and you encourage him that tomorrow will be better. If he had a rougher day than you did, then keep your mouth shut and let him vent for a change.
• Not trying to be patronizing to you guys, but my husband doesn’t “need” too much. If I smile when he comes through the door, ask him how his day was–and listen, give him something to eat )–anything, (or ask him to pick it up) and give him some lovin’ once in a while–he’s a happy guy. I’m glad I know how to please him. He knows what I need, too.
• Make time for each other–every day. I don’t care if it’s a walk to the mailbox. Hold hands and take your time. Sit together and have dinner. The wash, the dishes, the baths, the meds can all wait. Even if you have to sit in your mother’s room and eat  frozen pot pie off tv trays, being together is what counts.
• Play! Flirt! Chase each other around the house and give each other towel snaps. Turn up the radio and dance in the kitchen. You may not be able to get away–so don’t use that as an excuse. Use that sense of adventure, imagination and humor and sexiness right at home. We used to sneak kisses in the laundry room–and it made me think back to our dating days and trying to grab a kiss without  “mama” catching us.
• Keep that love life going. Now, I know, you don’t feel like it. But sex can be like exercise. I rarely “feel” like exercising, but once I get rolling, I’m glad I did. Do it any way. Maybe you can’t muster that 100% of the time, but your spouse needs you–and face it, who else in this whole world will give you what you need if not your spouse?
• If you lose your temper, say you’re sorry. Your nerves are bound to be raw. If you yell, snap, get sarcastic or downright mean–be quick to say sorry–and be quick to forgive.
• If you’re at the end, and your loved one is in hospice care, then know that this won’t last forever. Your life, your routines, your family traditions will all go on hold, and this is going to be hard, but get through the best you can.
• If you lose your way and your relationship feels stretched beyond its limits, or dry as a saltine cracker, trust that you’ll find your way back. Relationships are resilient, and caregiving doesn’t have to break it.

In the end, and caregviving does sadly end, you’ll be able to look at each other and say, “Look what we did.” Loving each other through the storms of life–the sweet times, funny times, and stressful times is really what it’s all about. And if you need help, seek marriage counseling. Hurts, resentments, misunderstandings build up over time–so get them worked out before they fester.

Sometimes you don’t know how good your marriage is, until it’s been tested. Is caregiving hard on your marriage? Sure. But you can stay together and even grow closer by the experience. Iit can also show you just how strong the two of you really are.

~Carol O’Dell

When Death Comes as a Shock, Natasha Richardson’s Family Faces Hard Times

Actress Natasha Richardson died yesterday–from a head injury. She fell on the bunny slopes while skiing with her son in Canada. She was 45. Her death comes as a shock to her family. As hard as it is to be a caregiver and watch someone you love die slowly, it’s even more heartbreaking to have your time cut short.

Her husband, Liam Neeson, their children, and all her family members are facing hard times. Consoling one another when you don’t understand yourself. The world just doesn’t make sense. You aren’t supposed to die at 45. You aren’t supposed to die from just falling down. She should still be here.

Shock is good. Shock insulates us when life makes no sense. I have no idea whether they had to make the decision to take her off life support or not. It sounds as if they did. That’s a tough, tough place to be, and it’s hard on families to know what’s best to do.

Even if you’re young and healthy, talk to your family.

Let them know ahead that if anything horrific happens, that you trust them to make the best decision they can. Let them know your wishes. (Check out The Five Wishes, a living will that’s in every day language). Encourage your family ahead of time to agree. Give your spouse, partner, daughter, whoever you trust–permission to take responsibility for deciding. As hard as it is, it’s even harder to get a consensus.

And, go ahead and write a letter to those you love. I have. They’re in the top drawer of my dresser.

In these letters, I tell my husband, my children, my dearest friends how much very much I love them. I encourage them that the best way to love me, to honor me is to live a great big wonderful life. Grieving is good. It’s necessary. It’s part of the journey–but then love me by living. Remember me by telling stories–and not just the nice ones. I’m flawed and complex. We all are. I remind them to be ordinary, be extraordinary, be yourself. Make mistakes. Forgive yourself. Laugh. Kiss hard and often. Take good risks. Make memories. Exert yourself for those you love. Believe in something. Change your mind. Try again. That’s life.

Natasha’s family has to grieve right now. They seem strong and loving, and our hearts go out to them. I hope they can hold each other and remember her. Yes, as unfair as it is, death can come as a shock. And for a time, all we can do is breathe and get through moment by moment.

~Carol D. O’Dell

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

How to Talk To Your Doctor: Getting What You Want and Need, for Caregivers and Families

Most of us pine for the days when we had home town doc who delivered us, knows everything about us–and cared that we stay alive. Not that most ever had that–but it sure sounds good, doesn’t it? As a caregiver to my mom who had Parkinson’s, heart disease, and Alzheimer’s, trust me, I’ve spent a whole lot of time in the doctor’s offices. I’ve gone round and round trying to get them to understand not only what my mom needed, but what I could handle.

I did a little research on-line to find out various ways to find a good doctor, and here’s what I uncovered.

What to look for in a good doctor:

Communication Tips for Working Effectively With Your Doctor and Staff:

• Repeat over and over: I am 100% responsible for my life. (And if you’re a caregiver, then you’re also responsible for someone else’s). Don’t leave your medical issues completely in someone else’s hands, even if those hands are attached to a physician. You should know what medications you’re on, what course of treatments you’ve agreed to–at all times.
• Chat with the staff and get to know them. Bribe them with a tin of chocolate popcorn or stop by near a holiday with a coupon to a local restaurant or coffee shop. Hey, it’s hard to resist someone who takes an interest in you, and that’s exactly what you’re doing for them. Ask about the picture of their kids, and use their name when you’re talking with them. This is just being considerate, but it comes in handy when you’ve got an earache and you call begging to be seen that day.
• Start out your relationship with your doctor by shaking hands (dressed), and looking him/her in the eye. Let them know that you’re an equal. You hold a job in your community (or you did if you were retired), and that you are intelligent and articulate. Without being bossy or demanding, let him/her know that you are expecting to be treated in a warm and professional manner.
• Go to the doctor’s office in a good mood! Be a sunshine to others around you. Be on time, don’t gripe about the little things, joke around with the staff–and watch how differently you’re treated. Take your knitting or your favorite magazine and get to know the person you’re sitting next to. Life is happening everywhere–even doctor’s offices.
• Write your questions down and keep them brief–but make sure you go home with answers. Also write down their answers or directions. Don’t expect their directions to make sense–put it in your own words and have a clear plan of action you can follow when you leave the doctor’’s office.
• Do your homework–go on the Internet, check out your condition and possible drugs, treatments, symptoms, and side effects. While some doctors find this annoying or intimidating, others (most) will be less likely to treat you like a two-year old. Don’t act like a know-it-all, but do be informed.
• If you don’t feel you’re being heard, then be clear. Ask a pointed question and make sure you get an answer. You have a right to know what’s going on. Start out asking in a firm and clear manner, but don’t give up. Restate the question and ask again.
•  Medicine has sadly become entwined with the pharmaceutical industry and we forget that there are other alternatives and compliments to drug therapy. Let them know what kind of patient you are, and state what types of treatments you’ll consider–or won’t consider.
• Consider holistic medicine as a complement to your main physician. Have you tried accupuncture for aiding in quitting smoking? Or for arthritis? Eastern based practices are now more mainstream than ever, and many of their benefits have been documented.
• Balance your caregiving responsibilities with the rest of your life. As hard as it is, we can’t center our life around one person–as a mother, daughter, wife, and woman I had to constantly weigh what was best with everyone. Some medical advice would keep you in a perpetual state of hospitals, doctor visits, and medical care and leave you no time for anything else. As difficult as it is to face, sometimes you have to say no.
• Write down your prescriptions and dosage and keep it in your wallet at all times. Don’t rely on the doctor or his chart–and realize that if you see more than one doctor and they’re not aware of the other’s medications, you could potentially have some serious drug interactions.
• Speak up if there’s error. It happens all the time. Dosages get written down incorrectly. The doctor orders another round of chemo and you don’t want it–or you can’t take that amount–or your insurance won’t pay for a particular treatment. Don’t get upset, but do speak up–remember that 100% responsible for your own life mantra I mentioned earlier. .”

My last bit of advice: Say thank you when you leave. Shake the doctor’s hands, and even if he or his staff act rushed or inconsiderate, then make it a point to show them how to be considerate. The amazing Maya Angelou said, “We teach people how to treat us.”

Caregivers have the added responsibility for being the health advocate for others. Take the initiative and draw the best out of those around you. Be responsible for yourself and those you care for. Have a goal, cultivate positive attitude and a spirit of gratitude. Generally, we get what we ask for, so be sure to state clearly what you want and need from the medical community.

~Carol D. O’Dell

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

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.

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