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Archive for the ‘medicine’ Category

It doesn’t matter your cultural or religious background–it doesn’t matter if you’re wealthy or just barely getting by, there are three concerns at the end of life most people share.

They’re heard by chaplains, hospice workers and volunteers, and by family members who gather around those they love and try to make the last weeks, days, and hours of a person’s life as comfortable and as meaningful as possible.

 

Here are the three biggest concerns at the end of life:

  • I don’t want to be a burden
  • I don’t want to be in pain
  • I don’t want to lose control over what’s done to me

I don’t want to be a burden.

As a speaker/facilitator in the field of caregiving, I hear this concern all the time–and it starts long before the end of life.

In fact, I heard it from my 25 year-old daughter. She said she’d rather go into a care facility when she’s older because she doesn’t want to be a burden. It’s a sad reflection on society to think that growing older or needing help to get around is equated with being a burden. (I didn’t teach her this, by the way :))

There’s a lot not being said here:

I don’t want to be dependent. I don’t want to be vulnerable.  I don’t like others telling me what to do. I don’t want to be in the way. I don’t want people to resent caring for me. I’ve dealt with the elderly and infirmed and I don’t want someone to have to do, to sacrifice what I did. I’m scared. I

But what if you’re not a burden?

What if caring for you is viewed as a privilege?

What if you plan enough ahead of time and arrange for the added/needed help so that family members do less physical work and can simply “be” with you–enjoy your company?

What if you do all that you can do now–health wise–to be strong and mobile and live longer in good health? (there are no guarantees on that one).

What if you have something valuable to offer–even in your last years and months?

What if even your dying is considered sacred and something to treasure?  (even if it is hard)

What if, by allowing us to witness your end of life, we learn how to handle our own?

Who else will teach us?

I don’t want to be in pain.

No one does. Certain diseases cause more pain than others.

I can’t promise you that you won’t be in pain.

I can’t promise you that the end will come quick or be sweet–or even meaningful in the sense that sometimes we romanticize certain events and imagine them in a glowing, fuzzy cinematic light with all of our loved ones gathered and all getting along and tears and smiles and kisses and we can be coherent and see them all and hold this wonderful moment for all eternity…and it isn’t always like that.

I can tell you that hospice in particular will do everything they can to keep you pain free.

Palliative care is better than ever–there are all over salves that numb you, take away the aches, meds to reduce fever and chills–but many of these medicines will gork you out. You may sleep a lot. You may not be fully aware of time or of your loved ones coming and going. You might be pain free, but there might be a trade off.

All I can say is that by knowing this now, you can come to some level of acceptance. That’s all I can offer you–or me. I can’t say how I’m going to go–whether it will be many years from now or any day.

I can’t say whether the end of my life will be peaceful or tragic. I just have to trust–and do all I can to attract peace.

But I do know that whatever I believe about the hereafter, eternity, heaven…it will be that I will not be in pain. I will be in peace. I will not carry the pains, hurts, and sorrows of this world onto the next. And that brings me comfort.

I don’t want to lose control over what’s done to me.

Isn’t it amazing that one of the last questions/concerns we have before we leave this earth is about trust?

This teaches me one thing–I better get to dealing with my trust issues now.

Trust is the underlying factor that determines the success of any relationship–marriage, friendships, communities–it all boils down to, “Can I trust you?”

The answer isn’t “Yes, I can,” or “No, I can’t.”

Trust isn’t about finding people who won’t ever let you down.

Trust is knowing they will–in some way or another–and being okay with that.

Loving them any way. Trusting any way.

Choosing and then living in trust. Not trust in others. Perhaps it’s trust in yourself.

Trust that you’ll be okay. Trust that you don’t always have to be in control.

It’s also about trust in something bigger than you–in God, faith, the universe, the good–whatever you choose to call it. Trusting that goodness will come your way. Trusting that the universe is out to help you.

In the end, we all know that death will come. Perhaps there will be pain. Perhaps I won’t be able to say when it will happen, where I’ll be, who will be around me, what care I will or won’t get. And that somehow I can still believe that it will be all be okay.

 

But there is one more lesson here…

There is a lot you can say about the end of your life–but you better say it now. Talk to your loved ones. Write your ethical will. Fill out that living will. Say what it is you want. Appoint that guardian or family member to speak for you when or if you can’t.

Say all the I love you’s now. Go on those dream trips. Make memories. Laugh, cry, make love, sing, dance.

You want to not be a burden?

Start now. Invest in your relationships. Call your loved ones and listen to their day to day problems. Spoil them with your time. Go for walks and hold hands. Tell them how very proud you are of them, of the kind, good people they’ve become–then they won’t think you’re a burden.

You want not to be in pain?

Don’t dwell on pain now–physical or emotional. Live “pain-free” by practicing forgiveness, letting go and laying old issues down. Pain thrives off tenseness, tightness, and focus. Pain therapists use many techniques to help their clients manage pain–laughter therapy, engaging the mind on something bigger, more interesting, acupuncture, yoga…by letting go of pain today, we don’t attract it tomorrow.

You want to not be hung up on control?

Start trusting today. Take a risk. Fail. Laugh it off and try again. When you feel like a knotted fist inside your gut, recognize it and choose to trust. Give someone a chance. Give them a second chance. Give yourself a chance. The person we least trust is ourselves. We mistrust our own goodness. We are our own worst critiques, our own biggest doubters. Start with small affirmations–say them out loud in the car or in front of the mirror:

“I trust my own good heart.”

The biggest concerns of life are no surprise–they’re our biggest concerns every day–when you come to think about it. Every day, we’re given a chance to face our fears–to see our own good–and the goodness around us.

If you’re a caregiver, and you’re with a loved one who is coming toward the end, reassure them–let them know repeatedly that they are loved, that you will do all they can to make sure they’re not in pain, that you will honor their wishes, you will be there–steadfast. They will not be alone. Each time you say this to someone else, you say it to yourself.

I know as a caregiver this time is scary.

You don’t know how. Perhaps this is the first time you’ve faced death in an intimate way–with a family member this close. I was just like you–my dad died in hospital–and I was facing the death of my mother in my own home. I worried if I’d be okay–if I could handle it–emotionally.

IYou will find your strength and resolve.

You will keep your loved one safe–and honor their life and their death.

You will give them the dignity they deserve.

Even though you may feel like running, you will be brave. You will be there for your loved one–and it will change how you perceive life–and death.

~Carol D. O’Dell

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

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Rattles

Mother has what they call the death rattle.

Every time she takes a breath there’s a rattle. Technically it’s congestive heart failure—the fluid around her heart is building up and her body can’t process it, so it’s filling up in her lungs.

I remember when Mother said she had a little kitten in her chest when she’d get bronchitis. She always was funny.

I keep going back to this book, How We Die, by Dr. Sherwin Nuland. It’s been my Bible lately. He’s guided me these past few months with his insight and depth into not only the process of death but its ramifications for the living as well. There’s so little out there on how to do this. I need to know the physical side in order to grapple with the emotional and physical aspects of how to be with a loved one as she leaves this earth.

When I go to hold Mother’s hand or lift it, it’s lifeless. It may be warm, but it’s deflated the way Daddy’s was after he died. Dehydration has caused her skin to pucker and gather over blue and swollen veins. I wipe each hand with a warm cloth. I wipe her neck and chest, her cheeks and eyes, ears and hair.

It must feel good to her. It feels good to me.

No one’s here and that’s the way I like it, to be able to wander in and out as I need to, to pray, cry, talk, sing, and leave the room when I can’t take it any more. I turn on the TV and hope for something funny, anything funny. I ramble down to the river and write, but I’m too anxious to sit and go back in. I’m going to take a bath. I haven’t made any calls today. 

Everyone’s just going to have to wait. I’ve done quite a bit.

I just want to be quiet and let it happen, not make it happen.

(Excerpt from Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir) 

This is what it’s like at the end. You don’t fight when the death rattles come. It sounds like an old-fashioned, out-of-date term, but it fits.

When I first heard of the death rattles, it was probably from some scary movie and it conjured up all kinds of terrible things. It wasn’t easy, sitting there, not “doing” anything. It was a time of being. Not doing.

In some ways, it’s a good sign. It’s a sign to let go. It’s a sign to stop fighting. To sit quiet, to kiss, ask forgiveness, and say good-bye. 

It’s nothing to be afraid of. When it comes, it comes. When it’s here, you’ll know what to do.

 I cleaned out mother’s room–made it less cluttered. Called her relatives and told them it would be soon. I began to make plans for her memorial. Gather pictures to make into a collage and presentation. I was over fighting death. It was time to allow the transition.

The death rattle also refers to a gurgling sound that comes with the last breaths, or even the sounds after death that the body produces–it’s the fluids that have built up in the lungs, throat and body cavities. It’s nothing to be afraid of, it’s just biology. We as a modern society know so little about death and dying and grieving that we’ve made things scarier than they need to be. We have so little experience being human–and sharing in this most sacred event.

Nothing and no one can prepare you for this day. You think you’ll panic or run, but you won’t. You’ll be too tired and too numb to get too worked up. You’ll also know it’s time and you’ll want to be there. If you have to run, that’s okay. No one should judge you. This isn’t a bravery contest.

The machines are usually turned off at this point, food and meds have stopped and those who need to say good-bye have come and gone–or stayed. All the fuss is over.

 It’s not about giving up as much as it’s a time of giving in.

 You’ll be grateful that your loved one’s suffering is almost over.

You’ll be grateful that as heart wrenching as it is, that you’re there–witnessing this most holy event. 

~Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

Family Advisor at www.Caring.com

 

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The latest stats released by the Alzheimer’s Association paint a grim picture.

USA Today reported that ten million are expected to get Alzheimer’s over the next 2 decades.

Most boomers I know are a bit stunned. 1 in 8 will get Alzheimer’s.

I started bunching people I know in eights. Terrible, I know.

My husband has 8 siblings. Which one?

I mentally grouped my friends and imagined myself visiting them, trying to rouse the remnants of our relationship.

It was so much easier in my imagination for it to be somebody else other than me!

I felt like those people in the Titanic lifeboats. The boat’s too heavy, who’s going to get the ole’ heave ho! We always kid about poor Leo’s icy fingers being pried off one by one. My husband says he can see me doing that. I tell him I’ll sing him a Celine Delion song and wave to him as he sinks to the bottom of the Atlantic. Just kidding.

I walked around for days living too far into the future, speculating too much about whether or not I’d be the one in eight.

Then, I remembered the quote:

“To tell a man his future is to condemn him to one.”

That’s kind of what this news did. Maybe it didn’t mean to.

I assume their reasons for imparting this knowledge was to spar research, educate the masses, but I wonder if they know what they’ve done?

It doesn’t take long for the rebellious inner child to stand up and yell, “Hell no!” I’m not going without a fight.

I’ve already seen Alzheimer’s up close and personal with my mom. She had Parkinson’s for 15 years and Alzheimer’s for at least the last three years of her life. That’s when I brought her into my home, so I know how brutal it can get. What I’m not willing to face is a two, three, four decade old bully poking at me, taunting me, telling me over and over he’s gonna get me in the end.

Are you worried about getting Alzheimer’s too?

One thing I’ve done is to go ahead and play my own devil’s advocate.

So what if I get it? What will life be like?

Many scenarios here: I could be mean and belligerent. Doesn’t sound half bad, I’m kind of tired of being nice all the time.

If I just had one day where I told people what I really think…

It could be scary. That’s what I don’t want. To be on the edge. Nervous, agitated, restless to no end. Paranoid. Angry beyond consoling. To that, I say, drug me. Drug me in a stupor if you have to. By then, I promise you, I’ll have had a good life, and if it’s too awful for me or for you, then I give you permission to gork me out of my…mind. If the last couple of years are a throw away then so be it. If it’s painful to watch, then don’t.

Go live a big, bold, purpose-filled life. That’s the best way I can think of being honored.

I’ve told this to my husband and my girls and it’s going in the “important drawer.”

If you love me, then do something meaningful with your life–in my honor, if it makes you feel better.

But, if I’m just in la-la land, rambling around in the past, and I’m rather amiable, then let me enjoy it.

Don’t remind me who’s dead or that I’m nearly there myself. I don’t expect you to play along and mess up the delicate balance of reality you’ve scrambled for–just make me comfortable. If I think I’m sixteen, or twenty four, or forty-four, then let me enjoy it.

I learned the hard way with my mom that most people fear Alzheimer’s (both as caregivers and for themselves) because they can’t control it. It scares them, rattles their nerves. Their loved one acting “not like themselves,” angry, sexually explicit, fussy, playing in feces–it unnerves people. Is it really all that bad? My brain went kaflooey. It’s not a reflection of the kind of person I chose to be–we are in fact, what we choose. It’s not a reflection of our relationship or of you. It just happens.

Brains go haywire and you can’t control it any more than you can control your dreams, your nightmares, and all those random blips that you dare never admit or mention to anybody. It’s just random electrical spasms of disconnected thoughts and of all the other thoughts you’ve suppressed. We all have it inside us, don’t kid yourself. We have to eventually make peace with our humanity, and our lack of humanity.

We have to make peace with this base self, animalistic, driven, insatiable self.

This isn’t even the bad part.

Alzheimer’s does a lot more to the body and mind than simply making a person different or moody or playing in their poop. You think that’s your biggest hurdle at the time, it’s not.

The forgetting grows like a fertilized weed and it begins to invade a different part of the brain and a person’s life: recognizing not only those they love but even themselves and what it means to be here, recognizing objects like what to do with a spoon, what to do with the food someone placed in your mouth, or when your body forgets to take its next breath.

 That’s when you wish for your fiesty loved one to return to you–memory intact or not. We have to come to terms with this too, and this is much harder and deeper. This is when chaos collapses in on itself. This is when as a loved one, you get quiet. You stop talking about it all, complaining. You’ve shed so many tears you don’t have any left. 

This is Alzheimer’s.

I kidded with my girls on Easter Sunday. I told them if I have mild dementia or Alzheimer’s, that I want a dress-up box–with a fireman’s hat like I had as a child, and French beret (we always had a dress-up box when they were little) I want a boa, and lots of make up, and a yellow rain slicker and golashes. I want a cat, I’ve always had a kitty. I want paints and crafty things. I want my room filled with Van Goghs. I want to work in a garden. I want to dance. A lot. I want loud music and me in my boa and fireman hat clutching a bouquet of forget-me-nots and a kitty in a windowsill looking thoroughly disgusted with it all.

We laughed. They said they would. Then they argued as to who would get me. They said they all took their turns with Nanny (my mother). I told them if I had known that would do them in, (trust me, I was the primary caregiver, not them), then I’d have let her fend for herself (joke, we’re quite a facetious bunch).

Each of my daughters have their attributes. At my youngest daughter’s house, I’ll be a fashionista–coach purses and Italian scarves. She promised me we’d make tents in the living room out of sheets and blankets.

At my middle daughter’s house, she’ll clean out my ears and under my nails. My clothes will be folded neatly–neater than they’ve ever been folded. We’ll color a lot there, and I’ll finally be on time wherever she takes me.

My oldest daughter will feed me anything I want. She’s a candy-aholic. We’ll stay in our pjs and watch movies, and she will kick butt with doctors, let me tell you.

While all this is “play talk,” it’s a good way for families to start easing into the more serious conversations.

I do this on purpose. To open the doors. To make everything not seem so ominous.

We all have living wills. We kid about what we want, but we also have the serious stuff in writing–about sustaining life, feeding tubes, and issues no person should have to make for another.

Am I worried about getting Alzheimer’s? Sure, but I fight it.

Are you? It’s only natural, but I hope you find your own ways to work through some of the fears.

I hope you turn the light on the bully monster in the closet and let him know you don’t plan on being intimidated for the rest of your life.

As I’ve mentioned in other blogs, I know what to do to prevent it as best I can–but life’s still a crap shoot.

I think I’m better off concentrating on having some big adventures, some wild tales and daring feats.

If I’m going to eventually forget everything, I plan on having a lot to forget.

~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

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Sometimes family members have done all they can do.

Even with home-health aids, their loved one’s care needs become too much.  As much as I encourage elders to live in their own homes and communities as long as they can, and as much as I believe in family cargiving, I do know that there might come a time when you’ve done all you can do.

When do you know it’s time for a care home?

When your own health fails. When the melancholy overwhelms you and won’t let go.

When one–or even two home health aides aren’t enough. When even night aides don’t help.

When the atmosphere of your home grows toxic, depressed, and so heavy that no matter what you do, you can’t seem to rise above it.

When your children–or your marriage begins to “fail to thrive.”

These are some of the important markers that might mean you’ve done all you can–and sometimes you can circumvent them–or reverse them.

But let’s face it. All care facilities (I’d rather call them care homes, but some are not home-like at all) are not created equal. A lot of times, it’s a matter of money that will afford you a “clean, well-lighted” place, but money can’t buy a  community of care, a sense of joy, or the compassion needed to treat our elders with respect and tenderness. I’ve seen too many care facilities that are just that–facilities–with cookie cutter care weighted down with depression, riddled with beuracracy, underpaid, overworked staff with too many patients to care for.

What would a great care home look like?

If I ran the zoo,

here’s some elements I’d like to see in an

Ideal Care Home:

  • A care home in a community based location that would also include a pre-school, a community garden, an arts center (open for everyone) as well as nearby medical facilities
  • Interns would be cycled by using high school and college students–including art majors, nursing and medical students, psych and education majors
  • Research connected with major universities would allow for additional funding and offer state-of-the-art equipment and care to seek breakthroughs in diseases and care strategies
  • Holiday celebrations would be held in the courtyard or in the arts center and would include children, seniors, family members, and the community
  • The community arts center would be a gathering place for all ages–with classes, activities, a garden, sports, and learning opportunities where various ages could interact and learn from each other
  • Nanny cams, tracking devices and other wireless technologies would be throughout and monitored appropriately to not only keep track of patients, but monitor their vitals–as well as available via internet for family members
  • Family members would be encouraged to take their loved  ones for the day or for the weekend and would be given the support they need to do so
  • Elder “jobs” would be available where the more able bodied could assist or educate others
  • The latest, most innovative care would be used (and studied) to assist those with advanced disorders, including memory disorder diseases
  • Alternative therapies such as accupuncture, aromatherapy would be incorporated for a whole care approach–and offered to family members
  • Medical information would be explained to family members (as well as a copy given to the primary caregiver so their care could be followed) in a timely, respected manner and their input would be valued. Loved ones would also be trained in proper care and encouraged to participate in safe and appropriate ways
  • Speakers and teachers from the community at large would be honored to come and share their insights–they share their art, inventions, and innovations
  • Care workers would be paid more than minimum wage and also offered further training and education. They would be expected to improve in their skills and interaction–as well and offered the opportunity to advance
  • Low patient to care staff ratio–particularly in memory disorder units
  • End of life would be neither hindered or hastened. It would be honored, holy, and sacred. Families could experience this at the care home or allowed to take their loved one home and know that they were doing the right thing by  allowing a peaceful passing

Now, I know that there are lots of logistics involved in pulling off a place like this–and then there are discussions of socialized medicine and a socialized society, and I don’t want to get into all that. This is more of a heart plea than a city planning meeting.

Even if some of these elements are considered, families would feel better about placing their loved ones in care homes. I also know if many care facilities that already incorporate many of these elements–but what I do know is that we have to require proper and even innovative care for our elders.

In the end, our compassion defines our humanity. 

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

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I’m a sandwich generation caregiver.

My 89-year old adoptive mother (who suffered with Parkinson’s and Alzheimer’s) moved in with us–my husband and I, two of our three daughters, plus a menagerie of dogs and cats.

My situation won’t be the same.

We have three daughters, and I had all of them while I was in my twenties.

That means when I’m 89, my daughters will be 67, 66, and 63. Yikes.

I hope they’ll be in good health and that we can all toodle around and take road trips, eat triple decker double-dipped ice-cream cones and enjoy our grandchildren–and my great grand children.

But there are no guarantees we’ll all be in good health.

And being in your late sixties and caregiving can’t be a picnic.

Just ask all the boomers who are starting down this road now.

Ironically, my mother-in-law has a mother-in-law. Neither are spring chickens. My mother-in-law is 79, and her mother-in-law is 95.

My mother-in-law has begun to slow down and is dealing with an arthritic knee. Her father-in-law died this year  and they’ve been driving three hours a day to help care for his mom (my mother-in-law’s mom-in-law). They’re worried about how things will go in the future, what care she’ll need, how they’ll manage.

They face the same questions I faced–what do we do about mom?

Do we place her in a care facility? Does she live with family?

But they (my father-in-law has his  2 siblings) also have different questions:

Are any of us capable of caring for her–long-term? 

My father-in-law just retired. He was planning on golfing, driving to see all the kids and grandkids, and instead, he’s caregiving.

Guess you just can’t get away from it. The best you can do is look a bit ahead and make a semi-plan.

And as we age, caregiving is even more difficult–physically in particular.

Families have new questions to ask. New plans to make. Grab the moments of fun now and not wait for some “golden” day for that dream trip or to think you’ll sail into your senior years in the glow of a sensual–just-two-love-birds sunset.

My plan is to really, really spoil my grandchildren–afterall, they’ll be young enough to care for me. That, and live big/love hard–now.

~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

www.kunati.com

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You’ve been caregiving awhile–

and you have to admit, you’re good at it.

But how would you know?

What is an UBER-Caregiver anyway?

In this context, I mean “over the top, more than necessary, to excess”

See if any of these fit you:

  • You take pride in the fact that you can maneuver your way around the Medicare/Medicaid site.
  • You know all the medical/caregiver lingo and even use the acronyms.
  • You talk like you’re a pharmacist  and try to diagnose everyone else in your life.  
  • Your loved one’s doctors ask you’ve ever considered going into medicine.
  • You’re the unofficial leader of your local support group.
  • Your loved one is always clean and matching, and people comment what good care you give.
  • Your loved one’s daily regime is more planned and detailed than a wartime tactical maneuver.
  • You’ve started introducing yourself as your loved one’s caregiver–not their son, daughter, spouse.
  • Your friends and family say they’d like you to be their caregiver when the time comes….

I know your defenses (my defenses)

You have to get good at this. You can’t help it, it comes with the territory. What else do you have to do? You might as well do it right if you’re going to bother at all.

It fills you with a sense of pride. And rightly so. Only…

Somewhere deep inside you there’s a small voice that says, “this isn’t what/who you thought you’d be when you grew up.”

You had other plans.

There are other things you’re good at to.

How did this happen?

Uber-caregiving isn’t all bad. Your loved one certainly benefits. They’re taken care of well–whether they like it or want it or not.

It’s the flip-side of Uber-Parenting and I’m guessing here, but I think it comes with perfectionist tendencies, wanting to please, and a tenacious spirit that loves to learn and be good at things.

Have you ever seen the mother who fusses with her toddler too much?

She leaps every time they take a tumble. She says they’re hot and bundles them up–too much–their little cheeks are flushed and they look pudgy in their three layers. She’s a know-it-all that drives all the other parents bonkers. She thinks her kid is brilliant…and therefore, by default, yours isn’t…

Same thing, honey. It’s irritating as hell.  

And while it’s good to be good at what you do, you might have gotten carried away.

Why? For me, I think I was bored. My mind and body is active and is always searching for something to challenge it and keep it engaged–for meaning and purpose. And the only thing that seemed available at the time was caregiving. Alzheimer’s, heart disease, and Parkinson’s had become my life. I liked the challenge. I liked learning how to handle all this. It made me feel smart–and needed.

The only thing is, it’s not all I’m meant to be. I’ve always been a writer/communicator/artist. That’s who I am at my core.

Why is Uber-Caregiving Not So Good For You?

You might be driving your loved one nuts.

You might be driving away help.

You might be isolating yourself and not know it.

You might be running from your demons/avoiding personal soul/heart work.

It might not be as fulfilling as you try and tell yourself it is.

And one thing I know for sure.

You’ll eventually be out of a job.

Our elderly, our infirmed loved ones will eventually die.

I know you don’t want to hear that word. You don’t want to think about it. Part of you believes that if you’re good enough, give them the right meds, find the right doctor, enroll in the right treatment plan…that they won’t die. You’ll have more time.

You might (might) buy them–and you a little time, but people die. Death, dying, grieving are all a part of this experience. We avoid it as long as we can, but eventually, we have to look at it.

I say that with a gentle voice and tender hand. You can’t always feels those things across the abyss of the Internet, but I mean that with utmost kindness.

 

Your loved one will pass away, and your life must go on.

What will you do then? After years of caregiving. Years of pouring your heart and soul and energy–and money into all that caregiving asks and seems to demand.

And then your life changes. It’s over. In one day. And you walk around in a blur. Part of you is relieved. You’re exhausted, you didn’t even know how exhausted you were, but another part–a bigger part is completely and utterly lost.

I tell you this because I know. That’s how I felt after my mom passed away after three years of full-time caregiving and 15 years of being her only child, her daugher, and her caregiver coordinator. That’s a long time. Long enough for that identity to form.

When I started writing Mothering Mother, I didn’t realize I would become an uber-caregiver, and I certainly didn’t do it all right. I wasn’t a perfectionist, but at times, I was a know-it-all because caregiving was all that I felt like I was thinking, doing, being. Writing about my mother’s actual passing allowed me to look beyond that point, to deal with my guilt and grief–and begin to slowly build my life again. I did because I didn’t want anyone else to have to face it alone.

I ask you, look past today. Look past that moment of death. Look past that year of grieving, and look into your own future.

Who will you be?

What will you do?

We’ll talk more tomorrow.

~Carol D. O’Dell

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon and in most bookstores.

Kunati Publishing

www.mothering-mother.com

 

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Caregiver guilt is debilitating. You know that the word, “guilt” isn’t a healthy word, but many caregivers feel overwhelmed with a sense of I should, I wish I had, why can’t I just…

I certainly experienced my fair share of caregiver guilt.

The irony is the more you do, the guiltier you feel. Trust me, the family members who have disconnected from their loved ones who need them feel far less guilt than you do. Why? Perhaps it is as simple as a disconnect. They just don’t “feel” it. It’s a safety valve. But those who get in the thick of the battle, who give time, money, energy, and day-to-day care are the ones feeling the most guilt. Crazy, huh?

Certain family dynamics add to this.

Was your mom the queen of guilt? Is this a learned behavoir for you? Did you hear the phrase, “You should be ashamed…” when you were younger?

I sure did. Certain religions, (growing up Catholic, or in my case, Pentecostal) seemed to serve guilt as an entree to life. I was taught to feel bad about everything–my thoughts, my actions, my in-actions, you name it. I never felt good enough, or that I could ever do enough.

That’s sad. I don’t believe that shame based manipulation is good for anyone, especially a child. And I don’t believe that’s what God ever intended. Guilt can lead into the downward spiral of depression. Be careful of that little buggar. Stats say that 52% of Americans experience depression–and I wonder what percentage of them are wracked in guilt? (depression.about.com/od/factsfigures/Statistics.htm –

Sure, guilt might work for awhile, on the surface–but it doesn’t begin to touch on the issues of the heart.

Sometimes, our loved ones still employ guilt tactics to keep us entangled and paralyzed.

Ever heard these lines?

“You never come to see me.”

“Why can’t you just do this one thing for me.”

“I thought you’d be glad to…”

My mother had a purse full of guilt lines and she’d whip them out all hours of the day and night–and it didn’t matter who was around. At 89, I insisted she move in with my family and me. She had Parkinson’s, and although she wasn’t aware, the beginning signs of Alzheimer’s. I moved heaven and earth to sell my home, her home, put us all under one roof, drive her to every doctor’s appointment, find her a church she liked, buy her favorite foods, and you know what she used to tell people?

“Carol’s asked me to give up so much just to move in with her.”

Now, I can laugh. Now, I see that as her defense mechanism. Now, I see that statement as a way of her to keep her dignity, to feel in charge. I wasn’t as merciful with her at the time. I rolled my eyes and looked disgusted. And yet, I did feel guilty. Had I made the right decision?

Here you are. 30, 40, 50, or more–and you’re wracked with guilt.

Here’s something I wrote in journal several years ago as I was caring for my mother:

Letter to Self

Dear Carol,So far, you’ve been taking care of your mother for a year and a half. You’ve stuck it out through crazy times, angry times, tender times, through hospital visits and home health visits and while everyone else gets to come and go, you’ve stayed. You haven’t had a vacation and no more than two days away this whole time. I know that when your mother dies, you’re going to feel guilty. I know you. You’re going to think that you should have been kinder, less rushed, that you should have done more with her, taken her more places, insisted the kids be nicer. I know you’re going to miss her and wish that a million things had been different.I want you to know you did the best you could.You remained faithful. You grappled with every decision. You let her into your life and your home, and you and your family did what most people wouldn’t even have considered, much less done. People aren’t perfect, and if they try to be, then they’re not real. We’re not supposed to get it all right.Remember that you had to balance this with being a wife and mother. It’s only natural to want to move forward and be more interested in your children, in those who are living. That’s how the human race survives.

Remember that her emotions were always on an ever-widening pendulum and Alzheimer’s took it to frightening heights and devastating lows. You learned as a child that you couldn’t trust her with your heart although you kept trying. It just wasn’t ever possible. That’s okay. You also know she loved you. And you loved her.

It really did help to write that letter to myself. To rationalize guilt away, to expose it, to learn to be tender with myself–as tender as I would to a dear friend.

Become your own friend. Talk to yourself. I do a lot of self-talks in the car. I’m grateful for blue-tooths because most people just think you’re talking on the phone.

By going into “third person,” I’m able to objectively treat myself with the same respect, dignity, and honor I tend to give others.

A Few Guilt Breaking Techniques:

  • Self Letters, and letters to your loved one explaining why you simply can’t fall into the guilt trap any more
  • Self-talks–or talk to your loved one (metaphorically). Argue, tell them to stop. Tell them it isn’t going to work any more.
  • List all the things you’ve done–with love, kindness, and committment. You’ll be surprised how very long this list is.
  • Put yourself in your loved one’s shoes. They don’t like feeling weak and vulnerable, and guilt is one of the very few tools they possess.
  • List ways you “think” you’ve failed. Then really look at that list. Is this in any way realistic?
  • Cut yourself some slack. Take “perfect” off the table. Be realistic. If there’s one area you, personally would really like to improve upon–then make a plan. Do it. One thing–not the whole mountain.
  • Learn to let go. Whatever you didn’t do right 10 years ago, yesterday, or in the last five minutes is the past. Let it go. Keep a stone or shell in your pocket to remind you to let go of old baggage.
  • Visualize guilt as a toxic bright green substance as dangerous as battery acid. Every time you have a guilty thought, see your heart being splattered with this yucky, sizzling, flesh eating gunk. Become “allergic” to guilt.
  • Adopt the mentality, “If I’d-a known better, I’d-a done better.” Now you know. It’s a new day.
  • Take a tube of lipstick and draw a big heart on your bathroom mirror. Align your face to fit the inside of that heart. Every day, put yourself in that heart. Smile, and say outloud, “I’m a good person, and I have a good heart.” Do this several times a day. Straighten your posture. Take a few deep breaths. Smile. Begin to view yourself as your own best friend. Your own advocate. Don’t let anyone, including your “other selves” tear down this person you love and respect.

Have a great, guiltless 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

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Why are adult day care centers so important?

Because according to National Family Caregivers Association, 77% of all caregivers go it alone. Their loved ones live with them, or near them. Most caregivers have to work. It’s not an option. With the average caregiver being an 46 year old woman, she can’t afford not to work. She’s technically a boomer, and has a mortgage, oftentimes children, she may be divorced. She has worked hard to create her life–her career. She needs to work for the insurance benefits and continue to save for her own retirement, and yet she finds herself in the midst of caregiving responsibilities.

Caregivers worry.

They worry their mom or dad or grandparent is left alone all day. They worry mom or dad is going to fall, that they won’t be able to get to the phone, or they’ll take off their “button” and will lie helpless for hours. They worry their loved one isn’t eating, or does nothing all day but sit in front of the television or they might wander due to dementia or Alzheimer’s. They worry that their loved one is lonely, bored, not getting enough exercise, isn’t taking their meds….the worry list goes on.

And while they’re worrying about that–they have to juggle their families, doctor appointments, cleaning and cooking, and job duties. It’s a wonder their heads don’t explode. It felt like mine would during the almost three years I cared for my mom full time.

What’s one of the easiest, safest, more natural alternatives to relieve some of this caregiver stress?

Adult day care centers.

Most adult day care centers are community based, usually non-profit, and are conveniently located. It’s a place that’s not run by a corporation, but is almost always run by someone with a big heart, someone who lives within this community and knows the resources needed and available to families.

As an author and speaker, I get to visit and work closely with adult day care centers, such as Peaches-na-Basket in Jacksonville, Florida. Dolores is resident “Mama,” and her heart’s desire is to provide a safe, loving, homey environment for her seniors she calls her “Peaches.”

How very blessed north Jacksonville is to have her!

Who needs adult day care?

Average families–families who work, or need a few hours break. Seniors who need to get out, meet new people, have some place to go, learn new things. Seniors who don’t need to sit around alone all day. Seniors who will be given their meds, provided with a meal and entertainment, who might be able to do a little shopping and be escorted on the community van. Seniors who need a friend.

If you’re looking for a worthy charity this holiday season, why not consider a donation to your community adult day care? What better place to give than to your own community?

~Carol D. O’Dell

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

by Kunati Publishing

Available on Amazon and in most bookstores

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I’m backing out of my driveway the other day with my cell phone cocked on my shoulder as I set a date with Studio 10 TV in Tampa Florida. I’m not sure even a year ago I could imagine myself doing that–preparing for a television program about caregiving, elder-care, Alzheimer’s, family and mothers. As I hung up the phone and marked the date in my calendar, I remembered a small vignette I wrote in MOTHERING MOTHER–how my mother and I were “Quite a Pair.” We were ironically suited for one another.

If anyone had dared to say this to me even five years ago, they would have encountered an icy stare. The caregiving years were not the time to remind me of our likenesses. That was not how I wanted to see myself, and although my mother was  bossy, opinionated and volitile. She was also dynamic, funny, and quite the professional.

My mother held her ministerial papers for over 52 years. She preached and taught, sang and played many instruments and was on TV and radio. She “carried herself well” as the southern saying goes. She was still my mother through and through, and even though I came to her late in life (she adopted me when she was 54, Daddy, 58), she still had a few good years left.

I witnessed how she’d get ready to preach–saw her closet full of suits, her handbags and matching shoes. The housework quieted as she prepared for her sermon or Sunday school lesson. She studied, prepared, practiced, and then she was up there–in front of everybody–waltzing across the stage like she was on Broadway. She was as comfortable speaking before hundreds or thousands as she was in the living room with her feet up. I hope some of that rubs off on me, and of course, she had me singing and testifying at the age of four in front of the whole congregation. No wonder it feels familiar.

Daddy and I sat on the front row, proud. I despised her at times–she was a walking juxtaposition of good and evil (it seemed to me, anyway), but up there…even I had to admit she was pretty amazing. 

Even after writing MOTHERING MOTHER and the prequel, SAID CHILD, after many revisions and edits, I still find that I’m learning something about her–and me.

And here I am, talking to TV producers and thanking my mother for her example.  

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I wanted this to be funny–that someone  in China is selling her mother on the internet. Sounds funny–in that sick, dark humor style I wrote many of the vignettes in my book, MOTHERING MOTHER.  Your mom gets on your nerves and you threaten her with eBay…. tell her the minutes are counting down, there’s a bidding war, mom–pack your bags.

But the truth is that this Chinese woman’s family is attempting to sell dear old mom to help pay her medical expenses. She has cancer. China has poor health care system that can’t take care of everybody (sounds familiar?) and her kids had already spent all they had on dad–who also had cancer. It stopped being funny. They hope to bring attention to the dilemma their country faces. Health care concerns apparently span the globe, and my heart aches for all those who find themseles in a desparate situation.  http://chinaview.wordpress.com/2007/05/24/mother-for-sale-on-chinas-internet/

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