Showing posts with label caregivers. Show all posts
Showing posts with label caregivers. Show all posts

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

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 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

Monday, July 2, 2007

Care Giving--Care Receiving

We've now turned the words "Care Giver" into a compound word.
Caregiver or caregiving is now written as one word.
Two words smeared together. Apropos. Two lives smeared together.

A Jackson Pollack painting is a great metaphor for Alzheimer's--layers of chaos--some beautiful, others haunting.

I wrote in my book, MOTHERING MOTHER that I thought that caregiving was such a sterile term. Mother has bonded well with her child makes me want to ask if bail has been posted.

I used to teach my daughters that family was an acronym for "Father and Mother, I Love You." It sounded really sweet when they were four and five years old.... Now they roll their eyes and give me a smirk.

Now I have a new word--Care Receiver.It's a two-worder. It looks funny as one word:Carereceiver. Care-receiver.

I prefer, "Loved One."

I'd like to be referred to as the loved one--the one who is loved.

Giving and receiving are reciprocal terms.Someone smiles, the other tears...or just sighs.
m
Carol D. O'Dell, author of Mothering Mother, available at Amazon