Monday, April 7, 2008

Three Sure Signs Your Loved One is Ready for Hospice

You think your doctor will tell you when your loved one needs hospice?

They should know, right?

Not always the case.

I asked my mother’s doctor about hospice (Alzheimer’s and Parkinson’s) months beforehand and was “poo-pooed” away. Mother had a great way of rallying herself together for doctor visits, but I lived with her, cared for her 24/7, and I was beginning to see a shift.

I knew my mother had taken a turn. I knew that both of us were over the tests, treatments, and hospital rigamarole. I knew, in essence, that she had given up the will to live.


Alzheimer’s does more to a person’s body than simply making them forget names and current events. They forget things at a molecular level as well. They forget what to do with a spoon, how to chew and swallow. These symptoms don’t just come and stay–like early dementia, it comes and goes. That makes it easier to dismiss it, deny it, and hope it isn’t true.


Some days, my mom was pretty alert and could at least remember to put whatever food was in her hand into her mouth. Although her ability to remember me or where she lived seemed permanently lost, her body could still manage biological urges.


On other days, that natural reaction of opening your mouth when food comes near–was gone. That’s a tough realization.

For the most part, Mother was still mobile, or at least trying to be. She had this incredible drive to walk, stand up, and I know that for her, Alzheimer’s had a dimension of added aggitation. Some Alzheimer’s patients pace, exhibit unbelievable strength, and can go with limited sleep.

It’s one of those diseases that can manifest itself differently in different people. Some are babblers, curse like sailors, say and do apprehensible sexual things, blurt out inappropriate racial comments. Others are silent. They’re entombed and barely ever move.

Same disease, different brains.

But how do you know as a family member/caregiver that it’s time to call hospice?

First, the working definition of hospice or palliative care is: your loved one has a “life limiting condition.” Their words, not mine. While it’s technically correct, and I can’t think of a better way to say it, it still sounds odd.

In layman’s terms, most people think it means your loved one has a diagnosis of less than six months to live, and with some hospice situations, a year. While that’s technically true, some people receive hospice or palliative services for much longer.


The difference in hospice and palliative care is that palliative care specializes in the relief of the pain, symptoms and stress of serious illness.

Hospice care always provides palliative care. Hospice focuses on terminally ill people who no longer seek treatments to cure them and who are expected to live for a year or less.

Three signs That Indicate Your Loved One is Ready For Hospice:


1. The disease has progressed to the point that there’s no cure, and you’ve decided to make your loved one comfortable and not actively seek to treat the disease.

2. You and your loved one chooses to forego any further testing of hospitalizations and will allow the dying process to happen naturally.

3. You’re ready to begin to let go, say good bye, and follow the oath of hospice, which is to “neither hinder, not hasten death.”


Check out www.nhpco.org, website for National Hospice and Palliative Care Organization for more information.

Caring Connections also shares this advice: (www.caringconnections.com)

“Anyone can inquire about hospice services. You or your loved one may call a local hospice and request services. The hospice staff will then contact your physician to determine if a referral to hospice is appropriate. Another way to inquire about hospice is to talk with your physician, and he or she can make a referral to hospice.Hospice can begin as soon as a ‘referral’ is made by the person’s doctor.

The hospice staff will then contact the person referred to set up an initial meeting to review the services the hospice will offer and sign the necessary consent forms for care to begin. Usually, care is ready to begin within a day or two of a referral. However, in urgent situations, service may begin sooner.

When is the right time to ask about hospice?
Now is the best time to learn more about hospice care and ask questions about what to expect. Although end-of-life care may be difficult to discuss, it is best for loved ones and family members to share their wishes long before it becomes a concern. This can greatly reduce stress when the time for hospice becomes apparent. When is the right time to ask about hospice?

By having these discussions in advance, uncomfortable situations can be avoided. Instead, educated decisions can be made that include the advice and input of loved ones.”

Shannon Martin of Aging Wisely shares:

Just recently when my Grandmother died, my aunt (who is a geriatric nurse) said, “I don’t know that it’s time for Hospice yet” even when my Grandmother had stopped eating and they had decided no more hospitalizations, tests etc.”


This shows there’s some denial, even among professionally trained individuals, especially when it involves their own family. Accepting that the end is near, that you will begin to have to let go, to sit quietly by a loved one’s bedside, to not go into “heroics” and throw on the paddles or rush to the ER is very, very difficult.


The last month of my own mother’s life was in many ways one of the most peaceful times of my life. It was also excruciating. As a society, we’re no longer taught to sit with death.

We’re no longer taught to let nature take its course, to relinquish our control. Learning to do this, to hear the clock tick, to let my family come and go as I sat by my mother’s bed and wiped her brow–

It was a finishing of something I had begun.

It was bone deep and cathartic, and gave me time to think and process.

I began to see the whole of my mother’s life.

It wasn’t only what hospice did for me or for my mom, it was what they stood for, the permission they gave us all to let go in love.

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

www.kunati.com

Wednesday, March 12, 2008

Caregivers: Step Outside, Take a Walk and Prevent Vitamin D Deficiency

When is the last time you went for a walk? I mean a good 30 minute walk

I’m not sure of all the reasons, but many of our elder loved ones gradually lose interest in the great outdoors.

I know that their eyes become more sensitive to light, but I also think they perceive it as a lot of trouble, or that they might trip and fall.

That’s sad. Nature is so healing to the soul and the senses.

Hobbies like bird watching and fishing aren’t too strenuous either and are extremely relaxing and enjoyable–as well as something new to learn and can be shared cross generation-ally. Between sunblock, the shade, and hats, you can still manage to get a little sun and not expose yourself to skin cancer.

Vitamin D is absorbed through the skin, and this is the easier, most natural way to receive it.

Being inside isn’t necessarily safer either. Home accidents are all too common.

But there’s a hidden danger from staying indoors--that’s vitamin D deficiency–and it’s on the rise.

The reason I’m writing on this topic is because of a neighbor I ran into. We were chatting and I did notice her color was off, and she told me that her doctor told her she had a vitamin D deficiency. She runs at 6am every morning, but then she works all day and doesn’t get home until dark. Still, I would have thought that getting in and out of your car, going to lunch, etc., would offer enough “light.” Apparently not.

Our bodies can naturally synthesize more than 20,000 IU of vitamin D in just 20 minutes of sun exposure without ill effect. Our bodies even ”shuts off the synthesis” when we get enough. This doesn’t happen when we eat sources of vitamin D — the same 20,000 IU of vitamin D taken as an oral supplement could be toxic.

I did a little research:

A lack of vitamin D leads to bone and muscle weakness as well as leads to osteoporosis.
Women are more likely to have Vitamin D deficiency than men.
Infants and the elderly are at a higher risk
People who are milk intolerant may also have a difficult time converting Vitamin D, and therefore, may be deficient.
Breast milk provides some vitamin D, but not enough, and there diet should be supplemented.
Even though you live in a warm climate, how you live, what you wear, your religious practice (clothing), may still cause you to be at risk for a vitamin D deficiency
In extreme cases, it causes rickets, a condition that causes “soft bones,” fractures and deformities.

Foods that contain vitamin D are:

Fortified milk, cod liver oil, (but who’s going to drink that stuff?)
Egg yolks, butter, and oily fish like salmon.
Beef, cabbage, and corn oil
Fortified milk and breakfast cereals, are contain a synthetic vitamin D.
Check to make sure you’re getting at least 200 (IU–international units) per day in your multi-vitamin.

Infants need a higher dose, as do many of our elderly since their bodies may not be processing what they’re ingesting. In some older people, a 400 IU supplement may not be enough because they do not have proper absorption (calcium/lactose issues).

Pediatricians are surprised to see children suffering from rickets, a bone disorder caused by vitamin D deficiency. Is this due to our new lifestyles? Longer school hours, more homework, video games and computer time? How many kids do you see outside in the afternoon in your neighborhood. Not as many as I used to.

If you’re experiencing severe muscle weakness and pain, it may be an undiagnosed vitamin D deficiency.

Recent studies suggest low vitamin D may be putting the elderly at higher risk for the bone-thinning disease osteoporosis and life-threatening falls and fractures.

Not wanting to scare you, but vitamin D deficiency contributes to certain forms of cancer, high blood pressure, depression, and immune-system disorders such as multiple sclerosis, rheumatoid arthritis and diabetes.

What to do?

Check your multi-vitamin and get the proper dosage
Sit outside or even better, go for a walk 20-30 minutes a day
If you think you might be deficient, ask your doctor for a simple blood test

I hope I’ve alerted you to something that could make your life or the life of your loved one better–and brighter!
Caregivers, getting outside is a wonderful way to connect with your loved one. Share a glass of milk, pop your vitamin and grab a fishing pole, or go dig in the garden. Alzheimer's folks light up when their environment changes,and even if your loved one can only make it to the front porch, then that's okay. You can do a bit of yard work at the same time.

It might take a little coaxing to get them out the door, but it's worth it.

Hope you enjoy an evening stroll.

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

available on Amazon
and in most bookstores

www.mothering-mother.com

Tuesday, March 4, 2008

What's a Dry Run? Feeling Duped

Caregivers who have made it to the end stage are fitful, worn out creatures who shouldn’t be messed with.

The "dry run" I’m talking about when you think your loved one is going to pass away, and you call all the family, cry, say good-bye…and then they rally back to health.

You think you’d be relieved, but you’re exhausted, and if you’re like me, I felt a duped. Punked, like the new TV show calls it.

We had already called hospice which was extremely upsetting because it means you face that the end is near.

I could barely say the word, “hospice” at first.

Calling all my mother’s family was grueling–to say this again, and again–”I don’t think mother’s going to be here much longer.”

I cleaned her room, bought new curtains, made things simpler, gathered photos for her memorial service, prepared my kids.

Things got worse: she wasn’t eating and I sat by her bed and drizzled melted ice cream bars into her barely parted lips. My back ached. I grappled with the idea of a feeding tube and decided not to. She had stated on her living will not to, but it was excruciating to wonder if I had done the right thing. I wiped her face, stroking her tissue paper skin.

I stopped everything–going anywhere. Cooking–my daughters took over for me. Church–we all felt weighted and no one knew exactly what to do with ourselves. Everyone just sat on the couch…waiting. I lived off of strong coffee.

That lasted for about three days–and nights.

I wake the next morning, and she’s standing next to her little kitchen area.

She looks alert, asks, “What’s for breakfast?”

Now, see the whole picture before you judge my reaction:

My hair is matted to the back of my head from sleeping in the recliner next to her bed, I’m in rumpled clothes, and my mouth feels like I squeezed white glue in it. I haven’t seen the sun in days and I have no idea if my family is still in tact.

Breakfast!

I'm pretty sure I let a few curse words fly.
I was a bit miffed. Confused.

What day was it? Where was I? I scrambled eggs, made her a tray and took a shower.

Yes, I was angry, but it was good to be angry.

What do I mean by that?

Anger, ironically is a positive emotion.

You can only get angry at something you believe you can change.
Apathy is when you’ve given up.

I didn’t want my mother to die, but I felt like someone had tied a rope onto my ankle and kept pushing me off a ledge over and over again. Caregiving had taken its toll. My emotions were strung so thin I had nothing left.

I hope letting you know that a “dry run” might be in your future will give you the heads up you need not to wear yourself slap out.

You never know what’s going to happen, but many people experience a “premonition,” an event that precedes the actual time of departure.

I believe it happens for a reason. It helps us get our thoughts and hearts aligned. It helps cushion the blow.

I actually walked around for a few days a bit ticked at her.

My life felt like I was walking into a room and knowing I went there to get something/do something but couldn’t think for the love of kittens what it was I wanted.

She toodled in her apartment (built onto our house), dozed, and we chatted. It’s hard to stay mad at someone who’s living on borrowed time and doesn’t know who the heck you are.

By then, she was referring to me as “little girl,” when she could find words at all.
What did I learn?
The will has more to do with life and death than a diagnosis.

A “dry run” is a lot like what you do when you're a little kid and you go in your mom or dad's closet and try on their shoes, coat and hat. You didn't know it, but you were practicing being grown. You were trying on your future.

And besides, it felt good to be mad. I can deal with mad.
~Carol D. O’Dell

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

Available on Amazon
www.mothering-mother.com

www.kunati.com/mothering

Friday, February 29, 2008

Caregivers: What Do You Believe You Deserve?

I’m hoping someone out there will step up and tell me

I’m not the only one who does this.I had this huge personal revelation that was a part of a deep belief system–and I realized that I did this very “thing” during caregiving–and if I did this, other caregivers might be doing it too.

This is the “thing” I’m talking about.

Paying for what you’ve done.

Example: You know how when you’re a kid and you’re supposed to get to go do something fun–like say, to go a birthday party–your parents tell you that to be able to go you have to clean your room, cut the grass, and when you get back you also have to do all your homework for the week?

In other words, you have to pay for having the good time.

And of course, you really had to PAY if you were ever bad–came home late, got in trouble (they called it punishment)

Well, I realized that I was (and am) still doing this to myself.

If I went out of town or went out to dinner with girlfriends, I’ve always made sure the house was clean, there was extra dogfood–and if I was gone a few days, I’d make sure there was a roast in the crock pot, a lasagna in the freezer…in other words, PAYMENT.

I couldn’t ever just believe I deserved something good.

Not just a gift–a gift is given sometimes to the UNdeserving.

I mean, believing deep down that I deserved something good–with no need to pay for it in any way.

Remember the old Puritan Ethic?

Work hard and God will reward you.

I twisted it even further…Work hard or God won’t reward you.

Even after you’ve been rewarded, STILL work hard because you probably haven’t worked hard enough!
In other words…work, work, work!

Did I hardly ever give myself a break (in part) as a caregiver? Not too much because I believed I had to PAY for past transgressions. I told myself I couldn’t find good help (in part, true), or that mother wouldn’t adjust (also true) or…the list went on. I know now that I thought I had to pay for my own good health, or pay if I were to even think about having a good time.

Sick, I know.


Recently, as most of you know, I published a book, Mothering Mother.I’ve spent months and months at caregiving talks, book signings, TV and radio spots. I’ve gotten lots of attention–something adults don’t like to talk about. I’ve received “fan” mail from wonderful caregivers and readers, I’ve received roses at special events…been on CNN, and it’s been hard, hard work, but it’s also been a whole lotta fun!

I’m suited for this. I love the juxtaposition of thought and quiet and contemplation and creating something on the page–and then I LOVE dressing up, “performing” mom and me in my little one act plays where I do both of us–I love making people laugh and cry. I love signing books! I could do it all day! I love knowing that I’ve touched someone’s lives. I even love the drives, the bookstores, the blogs.

Yikes. Does part of me believe that because I love it so, so much that I should have to “pay” for all this fun?

Now, a little bit of the hullabaloo has worn off and I realize that I’ve lapsed into this “I need to pay my family back for all that.” I’ve taken time away, stayed overnight, spent copious hours online and in bookstores. They’ve been patient and proud, but I’m sure it gets old.

I see that I’ve been in drudgery mode lately–working hard with no joy. Taking jobs that are clearly not me. I thought I had to. I had so much to pay back.


Caregiver: Do You Believe You Have a Debt You Have to Pay?


I once had this great therapist who said the magic words that

changed my life…

“It’s a new day!”

So, I ask you–is there some part of you that took on the role of primary caregiver, or hardly ever lets yourself take a break because you believe you have to pay something back? Am I attracting this because I believe I need to pay? Do I feel guilty that my loved one is sick/dying?

Do I need to pay?

For being that black sheep?

For that adventure in college?

For screwing up my finances?

For taking off and letting my siblings deal with mom and dad for a while?

Because I enjoy good health and financial security?

Let it go. (I says to me-self)

Look at the sky and say, “Thanks!” That’s it.

A heart of gratitude is all that’s asked.
That’s The Secret.

Make a list of what you deserve:

I deserve to have daily joy.

I deserve to view myself with tenderness and compassion.

I deserve to be appreciated.

I deserve regular breaks.

I deserve help on a consistent basis.

I deserve a real vacation every year.

I deserve to caregive out choice and heart of love.

I deserve for my siblings/family to contribute.

I deserve for my thoughts and opinons to be respected.

As for caregiving, yeah, you may still want to and need to give care–but this could be the revelation of knowing and believing that you're simply good enough, and that you deserve good things without having to "pay," well, that changes everything.

~Carol d. O'DellAuthor of Mothering Mothering: A Daughter's Humorous and Heartbreaking Memoir
available on amazon
www.mothering-mother.com

Tuesday, February 26, 2008

Caregiving Transitions--The Elder Driving Dilemma

Life changes.
Just as we get used to one thing, it no longer works, and we have to figure out the next transition.

Caregivers and the folks they love and care for experience transition in rapid succession.

It's a lot like when your child turned fifteen--they can drive with you in the car, and before you know it, they're sixteen and begging to drive alone--you aren't ready for this--or for the dating, curfews, part-time jobs, SAT preps, and BAM! They're eighteen and headed off to college.
Only three years ago they were still your baby--gangly yes, but not living in a dorm, voting, and heaven forbid, fighting a war.

Our elders also go through rapid changes. You question whether they should still drive so you drive behind them, monitor their turns and parking. Your doubts are confirmed and it's time to have the first of many BIG TALKS.

The transition from driving to not driving is oftentimes the first a caregiverr must prepare for, and I do mean prepare. It's best to have this talk as a scenario that hasn't occured yet.

"Dad--"
"What?"
"You know, you're 85 and still driving, and I think that's great, but let's face it--one day, you will most likely not be safe behind the wheel."
"I don't want to talk about it."
"We have to."
"No, we don't."
"Yes, Dad, we do. Hear me out. I love you. I want you to have your independence--I really do. I respect you immensely, and I love you and want you to be safe--and I don't want you to hurt someone else."
(silence)
"This is what I propose. I think we should do what I did with your grandson. I think you should consider driving only when someone else is in the car with you. That way, I can see how you're doing--will you do that for me?"
(silence)
Take his hand. Be quiet for a minute. Change the subject. Enough for today. Go get an ice cream.

This is the first conversation. There will be several.

He has to get used to the idea that his life is changing. He has to transition out of the life he has--and it won't be easy.

Let's think about what our loved ones are feeling:

I'm still healthy and my driving is fine, what's she talking about?
It's my car. It's paid for and I'm insured.
I only drive to the store and to church. I know my way in my sleep.
They just want my money.
Why don't they take all the drunk drivers off the road first. They're more of a menace than I am.
Once I give up driving, I'll be her prisoner.


By putting ourselves in their situation, we see how very painful having someone decide when you can no longer drive can be.

It's best if they decide when it's no longer wise to drive on their own, but in many cases, that's just not going to happen. Their judgement is impaired. They fear losing their freedom. It's teenage-hood in reverse!

What if Dad's cantankerous and won't stop driving even when it's not safe?

We'll talk about your options tomorrow.

~Carol D. O'DellAuthor of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir
available on Amazon
www.mothering-mother.com

Friday, February 22, 2008

How to Approach Someone With Alzheimer's or Dementia

Approaching someone with dementia or Alzheimer's takes a little finesse. Too many folks charge right up to them and get in their "personal space," perhaps because they don't realize that person's with physical or neurological challenges still do have and need personal space.

Whether your loved one lives at home and you're their primary caregiver, or if they're in a care facility, knowing how to approach them is a crucial skill for all involved.

Sometimes they don't approach them at all.
They're uncomfortable, so they stay across the room and avoid eye contact. Some people don't even go to visit their loved ones. That's sad, because they're just scared and don't know exactly what to do.

Here area few simple steps to make this situation more comfortable for everyone:

If you have or can get a name tag, it can help. Wear your name tag since many dementia patients can still read and it reminds them who you are.

Approach a dementia or Alzheimer's patient calmly, extend your hand, but realize they might not know what to do with it. If they're in a wheelchair, bend your knees and meet them at their level. If you're much taller, try and make yourself an equal.
Don't come head on--even in nature, this is considered aggressive my most mammals.

Stand a little to their side--so they feel they have some air to breathe and an escape path if they feel threatened. Also realize that if you come up behind them or directly to their side, they might not see or hear you and you may startle them. They may react by a scream or even try to hit you if they're agitated, so make sure they know you're coming up to them, then step a little to the side so they have some breathing room and don't feel "attacked." Remember the old fight or flight reaction--some people might try to run away from you if you startle them, whereas others may try to bop you a good one!

Say your name clearly and ask them theirs. If you know their name then don't ask them--tell them their name. They shouldn't feel tested or put on the spot.

"Hi, my name is Carol, and your name is Lily. It's nice to meet you."

If they're shaking your hand and want to continue to hold it, then allow them to. Some dementia/neurological folks like touch and are quite tactile. They might touch your clothes or your hair, but realize that if it goes too far, it's because they might not be able to judge appropriateness. Simply gently take their hand from the unwanted are and either hold their hand, or let go and back up just a little without drawing attention to the unwanted behaviour. Like a little kid, people like to do things they're not supposed to.

If they don't seem to want to shake hands, respect that. Some dementia/neuro-impaired folks abhor touch, so don't take it personal.
If they lose their attention and aren't interested in you, don't take it personal.
If they aren't smiling, don't take it personal.

If you are assisting them in the restroom or dressing, also stand to the side. Our elderly folk don't have as good peripheral vision and if you stand directly to their side, they may feel more of a sense of privacy. You can also leverage yourself better with one arm holding their elbow up to their shoulder and the other across their back. Remind them you're still there, but be quiet if they need their privacy.

If they go into a stall alone, make sure they don't lock the door (unless you feel they're clear headed enough to know how to unlock it. Simply hold it closed--even if you have to make an excuse about the lock. Realize some folks like to "play" in the bathroom--everything from playing with their feces, to clogging up the toilet with excess paper, to self play, so don't let it surprise you. If you feel uncomfortable with all this, ask for someone who usually takes them to the restroom to do so. It's perfectly okay if you feel ill-prepared.

If they start telling you their life story, listen, but realize part of it or all of it might not be real. If you need to leave--try to find a place to interject, "I have to go to the kitchen (for example) and say good-bye. If you can lead them over to a group or something they can do, then do that and get them involved before you step away. Sometimes this is not possible, and they can be difficult to disengage. Treat them with respect, but realize they might not grasp the subtleties of conversation and let you leave without you being assertive.

Realize they might "lift" your rings or wallet out of your purse--out of curiosity. Some are collectors, but you might want to double check things before you leave.

If they start asking repeated questions, "Is my husband here?"
It's best to say something along the lines of, "You really loved him, didn't you?" or "What did you two like to do together?" Don't confront or argue--but do allow them to talk about that person because they probably do miss them.

After a few visits, you can decide if you should say goodbye, or if that upsets them. Don't feel bad if you need to simply slip away.

Always, always, always talk to the staff--everyone--kitchen help, bathers, nursing staff--everyone. You need them to be your friends. They need to know you know them by name. They're more likely to treat your loved one well if you treat them well. They're also less likely to do something less than appropriate if you know their name.

Thank them for all they do. No one is ever compensated enough to care for another human being. Genuine thanks is a way of showing honor.

By knowing a few simple strategies and understanding how our Alzheimer's, dementia, neuro-impaired process information, we can enjoy a calmer, more meaningful visit for everyone.

Carol D. O'Dell
Author of Mothering Mother; A Daughter's Humorous and Heartbreaking Memoiravailable on Amazon
www.mothering-mother.com.
www.Kunati.com

Tuesday, February 19, 2008

If I Ran the Zoo: How I Would Run a Caregiver's Support Group

Remember the Dr. Suess book, If I Ran the Zoo? Well, I guess I've always wanted to be a zoo-keeper.
Lions, tigers, and support groups, oh my!

I have to admit, I didn't attend a monthly caregiver's support group while I cared for my mom. Why?

I guess you can chalk it up to my preacher's kid background, but I'm about meeting'ed out. I was a notorious school skipper in high school and I still have problems sitting through events where one person talks and everyone else has to listen, stand up, sit down, and clap on que. (Unless I'm the one doing the talking...and even then, I'm sensitive to people's time and attention spans).

For some reason, I'm either the slacker in the back of the room doodling on her notebook and making snide comments about everyone in the class--or I'm the front-row suck-up nerd hogging all the teacher's attention. One or the other--on any given day.

When I walk into a room with a banquet table and metal chairs placed around it, lit by a flourescent light and tired looking folks staring at one another--I want to go screaming out into the sunlight, find the nearest park, beach, or river and take a walk, that or go buy a triple expresso and power shop.

It's not that I don't realize that sharing your experience and working through the stresses, frustraitons, questions, and heartaches of caregiving isn't important. I know it is, but as my southern Mama always said:

"There's more than one way to skin a cat."

So, here's how I would run a support group. (dream scenario)
There would be couches, not metal chairs.
There would always be food and drink--and not just grocery store bought cookies.
There would be beautiful artwork.
There would be fresh flowers.
There would be music playing (sometimes jazz, sometimes, oldies, sometimes classical).

Stickers would be given out for doing things for yourself--making a phonecall, signing up for a class, etc. You would get to stand up, announce what you did for you, and get claps and/or hugs.
There would be show and tell--your latest photograph of your garden, a drawing, mom's broach, Dad's WWII medals, etc.
We'd share our favorite poems, books, and movie suggestons.

We'd have a gripe session and start off with cues such as:
"You wanna know what bugs me?!"
We'd throw eachother a potato to keep it going and anger would get a clap--we need to use our frustrations as energy so they won't implode on us.
We'd have guest speakers occasionally--but not all doctors and elder-care based. We'd have life coaches, a performer from the circus, a juggler who would teach us how to juggle, a policeman teaching us safety practices, a wardrobe consultant for you and your loved one...
We'd plan events--like a mother-daughter fashion show, or a WWII gathering of all the vets in the area--or a vintage car show and ride. We;d raise money for Alzheimer's or Parkinson's--or to sponsor a road trip!
We'd finish each session with either yoga or a walk or dancing. Movement is vital!

There. I might actually attend a group like this.
How 'bout you?

Carol D. O'Dell
Author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir,
available on Amazon
www.mothering-mother.com

Thursday, February 14, 2008

Spice Up Valentine's or Any Day

Dr. Christine Northrup, Oprah's gynecologist on speed dial and author of Women's Bodies, Women's Lives, and the Wisdom of Menopause suggests that you spend 30 minutes three time a week in "self love."

Yes, that's right. The M word.

Now, I can only speak for myself here, but unless "self love" includes eating a bag of Dove chocolates, painting my toenails and thumbing through a magazine, I'm going to have about 27 minutes to kill.

It's not like I have to woo myself or assure myself that I'll respect me in the morning...

As a caregiver, mother, daughter, sandwich generationer, pet "mom," I have to tell you, thirty uninterrupted minutes is hard to come by.
(pah dum,dum)

I figure I can blog about this if Oprah can discuss it at 4:00 in the afternoon while I'm making chicken pot pie.

But a healthy love life is important.

Being a passionate person spills over into everything in your life--how you dress, walk, what you choose to eat, how genererous you are with your timea and energies, how affectionate you are to all living creatures--not to mention the effects giving and receiving love has on your heart, immune system, psychological, emotional and spiritual foundation.

I thought I'd suggest a few tips for revving up the ole' love life for couples who also caregivers, raise kids, and walk dogs.

Mom’s Home—Quick, Lock the Bedroom Door!

Tips on How to Enjoy Your Relationship Even if Your Mom

Lives With You

· Put a lock on your bedroom door—and use it
· Sneak around—intimacy doesn’t just have to happen in the bedroom. Be playful! Flirt!
· Nix the old t-shirt and sweats and wear attractive PJs—they don’t have to be overly sexy to be attractive.
· Stay affectionate--even if you have to make yourself at first—call each other during the day just for a “Hi, and I love you,” hug and kiss hello and goodbye, cuddle on the couch, call each other affectionate names/ take baths or showers together (you do remember those?)
. Take short walks together—even 5 or 10 minutes of fresh air is invigorating and gives you a chance to talk
· Plan a surprise—sneak out to the yard after dark to cuddle on a quilt under the stars with cups of hot chocolate
. Laugh! Rent a comedy, pop some popcorn and sit ont the couch together--not in dueling recliners
· Don’t sweat it if you aren’t in a lovey-dove mood--caregiving is stressful and there are seasons in life. Remember though, a healthy love life is healing, satisfying and stress relieving—and better for you than a bottle of Scotch!


Now, go have some chocolate.
Happy V Day!

~Carol D. O'Dell
Author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir,
available on Amazon and in most bookstores

Kunati Publishing

The Last Weeks of Life: What's It Like?

Every passing is different, and yet, there’s something universal about those final days, hours, and moments.

Most people don’t want to talk about this, and now, most by far, do not have an intimate, up-close experience with death.

I needed to know how to do this. How to be there, how to incorporate this monumental event into my being.

This is what I wrote a few weeks before my mother passed away:

I’m on this euphoric high. It’s not real, I can tell. I’m not on any drugs, but it’s that out-of-body feeling. I’m excited, hesitant and nervous about everything. Walking around feels different, like the balls of my feet are the only parts of me touching the ground. I can’t stop thinking. I need to keep moving. If I slow down everything will fly off the earth.

What will I do? How do I start? I don’t think I can handle more changes. I’m leery of what’s next. I’m thinking about the funeral, the trip to Georgia. I see the cemetery, the gravesite, the mound of orange dirt, the chairs, and the green tent. I see me, shaking hands, a long line of people streaming out in front of me.

I’ve been in this cocoon for so long, these walls are so familiar. I leap ahead to her actual death. Me, there, next to her—will she wake up? Say something? Scream? Will she grab me? Will she just fade away, not saying anything?

During those last days, I kept one book nearby: How We Die by Dr. Nuland. It doesn’t sound like a happy book, and maybe it’s not, but when you need this information, you really need it.
This book became my practical template for what I was about to face. He writes of how we view death in our modern culture. We have to die from a disease now, not old age or because it’s our time. They used to call it “a natural death,” or he died from “complications.”

We’re into blame nowadays.
We think we have to pin everything on something, but life (and death) doesn’t cooperate. It’s complex, ambiguous, and all piled on top of each other like a plate of food from a church homecoming dinner. Forget trying to differentiate the ambrosia from the sweet potato casserole.

As my mother neared the end of her life, I was too tired to blame--nothing like three years of front-line caregiving to wear a person completely out. I read Dr. Nuland’s words about the end of Alzheimer’s. So much of it, I had already experienced. It was as though he were my fortune telling and my trusting palm laid open on the table.

I took deep breath after deep breath wondering how much longer. When someone’s 92, no long eating, barely swallowing, and even if you resuscitate them, what would you bring them back to? She’d still have Alzheimer’s; her body would still be wracked with the end stages of Parkinson’s. No feeding tube or shocking of her heart would change those facts.

Mother’s actual death took about three weeks.
Three of the longest weeks of my life.

Mother was in a coma and couldn’t be aroused without great effort, and then, only to look at me blurry with a backdrop of panic.
After saying my good-byes and making sure that each family member had that opportunity as well, and after I called the Chaplin, and say the Psalms, I stopped trying to rouse her.
I had to do all those things—my checklist. I made as many funeral arrangements as possible, and then it was time to be quiet. Hospice nurses came a few times to take her vitals, but I sent the bathers away.

It was just my mother and me most days.
I let my family go on with their lives.
Ironically, it rained for two straight weeks.
Good ole' Florida rain. Buckets.

I chose against a feeding tube.

This is a family and personal choice, and I don’t think I could have stuck to my decision if hospice had not assured me that this is humane, and that allowing the body to naturally shut down is a valid choice.

I watched every twitch, was she in pain? Not that I could tell.
I bathed her face and hands, swabbed the inside of her mouth with Vaseline. I kept her room quiet, cleaned and decluttered. We were in death-mode, and as unappealing as that sounds, it felt like the right thing to do.

I felt this incredible barometric pressure. No relief. I’d never paced so much in my life. Was I making the right decisions? Should I call 911 and scream, “Save her!” Or do I sit here, quiet, calm, and allow this to happen?

I chose to allow and the pressure lifted.

I found my own sense of closure.
I needed this time.
I needed this low pressure, this finishing of duties, this still and quiet room.
This was the end of a life, and that is profound and sacred.

I wrote hourly.
Stroked her hair, sat beside her, and waited.

~Carol D. O'Dell
Author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir,
available on Amazon and in most bookstores

Kunati Publishing

Tuesday, February 12, 2008

Sitting Beside Our Loved Ones as They Pass Away


The first time I sat beside someone I loved as they passed away was my adoptive daddy. He was dying of heart disease--something that had eaten at him the last decade or more of his life. I watched him pop nitro-glycerin tablets as if they were Pez candies.



But sitting beside someone in an ICU unit is much different than allowing the dying process to enter your home.



Mother and I were let in hourly--for ten minutes at a time. We sat in the orange vinyl chairs, or hovered over his hospital bed rail. I never felt as if I could get close enough.



And the nurse came and got us, told us he was going, and we stood by as he gasped his last breaths.



Sad, I know, but this too, is a part of life.



My mother's passing was different.

She passed away in my home. I sat in a recliner next to her bed. There was carpet, and although she was in a hospital bed, it was still homier. I had weeks to watch her die. Yes, it was excruciating, but it also gave me chance to climb down the mountain with her.



I've climbed mountains, real mountains, and I've learned it's not the uphill, the incline that's so hard. It's the decline when your quads are shaking, your balance is wonky, and you feel completely off kelter.


I wrote every day my mother lived with us. It kept me sane, helped me work out the enormous pressures and concerns I carried in my heart.

I allowed my family to keep living--going to swim practice, to part-time jobs, for my husband to go to work.



Life doesn't pause much, not even for death. But I sat there, that late spring, and I allowed dying to take up residence.



I wrote in my book, Mothering Mother:



Where are you, Mother? What’s going on?



I’m tired, but I’m more worried than tired. You won’t eat and it’s hard just letting you lie there not eating. The hospice nurse said not to force it and it felt fine when we were talking about it, but it doesn’t feel fine now.


Are you dying? Is this it? Are you taking those final steps or is this just another dip and turn? I don’t know; maybe it’s not for me to know. I’ve been back to your room two dozen times this morning. I can’t stay,



I just keep pacing, adjusting your pillow and cover like it’s going to help. I brush your hair back and look into your eyes, wondering if I’ve lost you for good.



I'm ironically grateful for this experience. I've sat beside my mother. I've read her Psalms, moistened her lips, bathed her hands and forehead. I didn't know if I could do it--sit there like that--but I did.



It's not even as painful to think about now as I thought it might be. It's soothing in a way. It's closure.



As a caregiver, you have to eventually realize that your loved will eventually die. It's tough to face, I know.



I hope whether you're in a hospital, in a hospice facility or at home, that you too, will have the priveledge of sitting in the quiet and experiencing life--and all that it has to offer.



Carol D. O'Dell

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

available on Amazon and in most bookstores

http://www.mothering-mother.com/

Monday, February 11, 2008

What's It Like To Be With Someone as They Die?

I wanted to know what it was going to be like.
I knew my mother was most likely going to die at home--in my home.

I had only experienced death in a hospital setting. Different animal.

Living with dying and death is something I had to learn how to do.

In that order. Dying is sometimes a slow process.
Dying is aching, doubting, hoping.
Death is final.

I wrote about my mother’s death in Mothering Mother.
I wrote about it moment-by-moment. I wrote it that way–sitting beside her, journal in hand. A word, or thought, or phrase that represented hours, days, and weeks as my mother took her “good old time.”

She made sure I didn’t miss a thing.
And I didn’t. I glued myself there.

I was scared. Didn’t know if I could do it.
But as we got there–almost three years of her living (and dying) with me as Parkinson’s and Alzheimer’s took its toll, I found that I was ready.
I had to be there. Follow through. Finish what I promised.

I wrote about it because I could find so little on it.
So little about something we all must do.
Sorry to be so morbid here, but I think it’s important.
Our society is so youth oriented that we don’t look at the full picture–birth to death.

Death was so much a part of people’s lives in the dark ages that they came up with a Latin phrase they used to write over their doors.

Momento Mori. It means, “We all must die.”
It’s known in literature to denote “symbols” of death–black, the skull, the sickle, etc. It dates back to the Roman times, to a general who had a slave walk behind him as he paraded down the streets celebrating his latest victory. The slave would call out, “Momento mori!” Meaning, look behind you, you are but a mortal.

We tend to remember the Carpe Diem version,“Seize the Day!”
It’s the end of “Eat, Drink and Be Merry,” we forget,“for tomorrow ye may die.”

Heavy stuff, I know. But if you’re about to face this, as I had to face this, you might be ready for a frank discussion

That’s why I say we look at it in February and leave the frivolity for May.
We have to incorporate living and dying into our lives in a healthy way. To embrace, and let go, and embrace again.

Readers of Mothering Mother know about my push and pull, mother-daughter relationship. But there was so much that occured before then. Relationships are difficult to translate to the page. So much history, so many tangles and layers.

It took a long time to get to that place–the love, forgiveness, acceptance place. And then, when I finally stopped trying to “fix” us, we were well into the dying process.

We tend to hero-ize or villanize people in our lives.
Good and evil, wicked witch, white knight.
Especially when we’re young–everyone falls into one category or another. The ambiguities and juxtapositions of life come over time.

Daddy was my hero.
I needed one, and he did a good job filling it.
But that made his passing deeper, and bitter-sweet.
Grieving is not only about the five stages of grief. (Kubler Ross–denial anger, barganing, depreesion and acceptance).

We think we can check them off like a grocery list.
No, it’s a circle. We keep going round and round, double back, get stuck, leap frog, only to find ourselves back at square one. But each time we rail against, drown in it, we’ve made progress. Minute progress.

~Carol D. O’Dell
Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
available on Amazon and in most bookstores
http://www.mothering-mother.com/
Kunati Publishing
~Carol D. O’Dell
Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
available on Amazon and in most bookstores
http://www.mothering-mother.com/
http://www.kunati.com/