Do You Have Only Days, Weeks, or Months Left with Your Loved One?

Those last few hours, days, weeks, or months are a mix or panic, sorrow, numbness, and tenderness.

It usually comes after an accident, diagnosis, or surgery–or sometimes, for our elderly, it follows a slow, painful descent.

However you got here, my heart goes out to you.

“I Don’t Know What I Should be Doing Right Now.”

This is normal. You feel lost, kicked in the gut–you have little or no experience at this.

I know your world feels as if it’s falling apart. You might feel the need to control everything, or you may feel that nothing is important. You may be going a mile a minute, making phone calls, demanding to see doctors, exploring treatment options–or you may be paralyzed and all you can do is sit next to your loved one and try not to cry.

Either way is fine. Your’re on auto-pilot. This is fight or flight. You wish you could just go back to life as before, but you can’t. You wish you could be a caregiver–as hard as it is, it sure beats feeling helpless.

Let others step in–or tell them everyone that everything can wait. Do what’s natural.

The Bare Essentials–A Few Important Things to Remember:

• Get a piece of paper and pen–write down anything the doctors or nurses tell you–you’ll be glad you did when someone asks you something and you have a complete mind meltdown
• Keep track of your loved one’s meds and treatment times–realize the care staff isn’t going to deliver the meds on the dot, but you have the right to ask–especially with pain meds (which can be done with IV) your loved one should be kept comfortable–and you can insist on this
• Designate a liason–a family member or friend who can field calls and coordinate plans–they’ll feel useful and you won’t feel overwhelmed
• Pace yourself. If you’re in a hospital or hospice or at home, know that you have to keep some strength and clarity in reserve–in case you need it
• Get your sleep–and get a bit of fresh air–you may be called on to make a very important decision–do you really want to do that on no sleep?
• If your loved one can talk, initiate a conversation about end of life care–feeding tubes, Do Not Resuscitate orders–if you have a living will, then you have it in writing–if you don’t, then as hard as this is, ask the nurse’s desk for one (the staff can get you one). It could save you so much heartache later
• If you do have a living will, bring it to the hospital or care center. Even if the facility has one, you need the other copy with you. Trust me, these things can slip through the cracks
• Be the family you are. Don’t let others judge how you’re reacting to this situation. If you’re not cuddly, then don’t do anything that doesn’t feel natural
• Know that you can’t control others actions–some people may rush to your side, others hang back. Let everyone “be” without worrying about them. Stay focused on you and your loved one

I’m Already Wracked With Guilt and Regret–We Should Have Caught This Sooner, I Should Have Done More…

These are normal feelings. It gives our brains something to do. We’re under the illusion that we control things, that if we had done this, not done that, that things would be different. Life is bigger than us mere mortals. Try not to stay in this awful, negative vortex.

You’re spinning your wheels and taking valuable time and thought –and love away from your your loved one and the time you have together. Stay Present.

I Can’t Think Straight–Shouldn’t I Be Making Plans?

Only if that brings you a measure of comfort. It will all work out. Let your liaison coordinate anything you’d like done now–flights, checking out care facilities, etc. This isn’t the time to get caught up in the doing–and if you are, do it because it’s your coping mechanism, not because you think you should.

When Do I Start Making Funeral Arrangements?

It’s different for everyone. Some people have family plots and know their local funeral director as a friend. Others are new to their area and haven’t a clue.

Are you the type to ask a doctor flat out how long does your loved one have left?

Do you want to know?

It’s okay not to, everyone’s copes differently. Also know that doctors are not infallible. They can be wrong. They can misjudge. Life is determined by the will–and the spirit. But if it would make you feel better to have a general time frame, then ask a doctor or nurse–ask if it’s time for hospice–enlist all the care you can get.

Hospice will be more wiling to talk about the death and dying process than doctors will (usually) -and palliative care (pain management). Some doctors resist hospice, but I find they’re a valuable resource to families. It doesn’t mean your loved one is going to die this second because you ask for hospice. It means you’ll have the support you need–people that have been through this.

Should My Loved One Stay in the Hospital, Go Into a Hospice Center or Should I Take Them Home?

Again, what’s right for you? And your loved one? Have you talked about this before? Have you ever thought about it? Is there care manageable at home? Will that be more stress on you–or less?

It may take you a while to figure out what feels right, and sometimes you figure out what’s right by what’s wrong–if the hospital is getting on your nerves and you just one everyone to go away and for it to be a time of peace, then you probably want a hospice center or to return home.

Does the care feel overwhelming to you? Would you rather go to a care center and let others take care of things? You can spend the night there, and most hospice centers are very thoughtful and serene.

Or does home sound like the only place you and your loved one wants to be. Home hospice is available as well, and pain can be managed from home.

You’ll figure this out along the way. Don’t feel pressured to make decisions prematurely or on someone else’s timeframe. Trust your gut.

For some, this is a deeply spiritual time, a time when faith is important. Even if you haven’t turned to your faith in years, if it feels right, then ask to see a chaplain, priest, or rabbi. Faith can oftentimes give you a measure of comfort and hope.

I’m Scared if I Stop Moving, I’ll Fall Apart

Is it so bad to fall apart? I know you think that if you do, you’ll never function again. You will.

If you truly can’t let yourself fall apart now, then set a date–in the future–and give yourself permission to fall apart then. Eventually, you’ll need to cry and scream, and beat something. You’ll need to curse, or sob, or fall to the ground. This is all a part of grief, and grief starts long before the last breath.

Losing a loved one is about the hardest thing you’ll ever do and the emotions that come with it are some of the hardest, strongest, saddest, awful-est time you’ll ever go through. But you will.

You will keep breathing. Your heart will keep beating, unfair as it is. You will.

But for today, be present.

If you have only days, weeks, or months left, then gather and treasure every sweet moment you have–

Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated Blog at www.OpentoHope.com

Kunati Publishers, www.kunati.com/mothering-mother-memoir-by-car/ - 95k

Do You Feel Like You Talk Down To Your Mom or Dad? Common Sense Ways to Show Your Love and Respect

It’s easy to do, to get so caught up in the bossiness of caregiving that you start barking out orders and not treating your loved one with the patience and thoughtfulness they deserve.

And let’s face it–your mom or dad (or other care receiver) isn’t crazy about being told what to do all the time, especially by their children.

They’re also ticked off that they’re sick and can’t do for themselves. This can come across as pure grumpiness and an unwillingness to go with the flow.

Why Do We Talk to Someone We Love in Such Negative Tones?

• We’re frustrated at the situtation
• Most things in caregiving (doctor appointments, changing a bandage, etc.) take three times longer than we expect them to
• Most caregivers have more to do and more people to fit into their life than is humanly possible–especially if you’re a sandwich generation or working caregiver
• We have old, unresolved issues that are coloring the current situation–and we might not even be aware of them
• We’ve all learned bad habits of using hurtful tactics and under-handed manipulation to get what we want.

I’m Not Totally to Blame–My Mom (or Dad) Is Really Making This Difficult!

I know, my mom seemed to enjoy slowing me down, confusing me, asking me to do more than humanly possible, making me feel guilty about not ever doing enough–and then saying something hurtful that really pushed my buttons. But know this…

No One Can Make You Feel Anything–That’s Your Choice

The first time I realized this was when I was sixteen years old and reading a Wayne Dyer book. Man, that guy’s been around a long time! (Me too!) A little soft-psychology/self help goes a long way on a teenager, and I remember the day I repeated those words to my mother. Needless to say, she didn’t take it well.

I also remember the day I was talking to our middle daughter about my mother’s downright meanness and cantakerous nature. We were in the bathroom having one of those “mirror conversations.” My daughter basically asked, “Why are you doing this? She’s so mean!”

I told my daughter that one day we’d be standing in front of this mirror in black dresses getting ready for Nanny’s funeral, and I had to be able to look that woman int he eye and know that I did the right thing–regardless of what was done to me.

Don’t Get Trapped by Your Feelings

Feelings are just feelings and you can choose to opt out of the cycle of hurt and anger.

I call it Caregiving by Loving Detachment

There are times to simply choose not to get on the emotional merry-go-round.

You can be a good caregiver without throwing your whole psyche and childhood into the mix.

The only way to stop a vicious cycle is to knowingly choose to rise above the situation.

Stop Blaming Yourself or Your Parent

Blame and guilt are useless. Either make a choice to begin to change because you know it’s good for you, your relationship, and you’re just plain tired of the way things have been going–or admit you’re just going to tough it out and live with things as they are.

If you’re ready to deal with this, then here’s some ways to begin to foster respect:

Create a New Caregiving Mentality–and Make Mutual Respect Your Number One Priority

I have to tell you, you’re probably not going to have much of a chance of changing how a 90 year-old thinks, but insisting on a different response is possible. (Fancy term, cognitive therapy)

It starts with you–you can offer an atmosphere of mutual respect.

Respect is Something You Must Give Yourself First

Like the old airplace/oxygen mask analogy–you have to place the respect mask over your own mouth and nose first. You have to know and believe down to your bones that you are a person of honor and respect–and treat yourself this way first.

How Do You Create an Atmosphere of Respect?

• Start wuth simple manners–please, thank you, hello, good to see you…even if you have to say these things for both of you (mimic what you’d like for them to say–for example, you hand them their pills and they take them–say out loud,”thank you” and then, “you’re welcome.”
• Lovingly detach and caregive from a place of ethics. Care for your loved one with dignity–but don’t get into conversations that will lead to negative talk. Stop talking. Hum, put on music. Smile. Just don’t go there. They’ll get the point after a while.
• Wear a rubberhand or carry a stone–anything that reminds you of your new choices.
• If you start down the slippery slope and say something you don’t mean or is disrespectful–STOP. Stop mid-sentence and say, “you know what? That’s disrespectful.” Then restate it the appropriate way. You’ll shock them, and you’ll shock your system and stop an ugly habit.
• Videio tape your interaction with your loved one–play it back and observe your behavour. It’ll make a greater impact to see yourself in action than anything anyone can say to you.
• If an argument starts, leave the room. Stay out of the room for 2-3 minutes and then calmly walk back in. Do what you have to do with a smile, but initiate no conversation. This will get their attention.
• Start small. Shoot for five “respectful” caregiving minutes. Build from there.

Know that even if this person has hurt you deeply in the past, you write the future.

What if they don’t deserve my respect?

Stop making this about them. You deserve respect and you can’t give it without it boomeranging back to you. Our actions aren’t always the criteria.

If your elder/parent/care receiver has deeply wounded you in the past (abuse, for example), then realize that you are respecting them by making sure they receive proper and decent care. (You don’t necessarily have to be the one caregiving them–let that go) That may be all that you can give them. I know how complex and hurtful life can get. If that’s all you can give, then that’s enough.

What If They Have Alzheimer’s or dementia? I’m not going to get anywhere!

Again, (and know that I know this first hand because of dealing with my own mother) respect as this point is more for you, so you’ll be proud of the words, the actions, and the atmosphere you’re creating and living in.

What If We Have Nothing to Say to Each Other?

New habits are always a bit uncomfortable. Live with the silence. Be okay with it. Smile. Touch their hand. Put on music. There are many other ways to communicate then with words.

Does Someone Deserve Respect Just Because They’re My Parent or Elder?

Respect isn’t necessarily deserved by someone’s age or their status, it’s the right of every human.

Giving it may be more important than receiving it.

Know that every time you give someone respect, you give a measure back to yourself.

Be proud that you’re reading this post, that you’re ready to face a touchy-tender issue. 

Know that you’ll have some set-backs. Know that they’ll still get to you. But know that you are capable of change.

You can change how you treat and talk to yourself–and others. 

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated Blog at www.OpentoHope.com

Kunati Publishers, www.Kunati.com/mothering

Caregiving the Second Time Around: Do You Realize You Will Most Likely Care Give More Than Once?

Do You Realize You Will Most Likely Care Give More Than Once?

I compare caregiving the first time around to being chased by a hungry/angry bear as you’re running a marathon. Sure, you’ve got to pace yourself, but you also better run like hell.

You don’t usually have the time or foresight to plan your caregiving the first time around.

It’s just one big chaotic frenetic fear-fest!

But what if you knew you were going to have to care give again?

Most likely, you’re going to care give a parent the first time. But you have two parents…and you might have in-laws…and a spouse…and siblings…and god forbid, you have children that might need you to care give them–life is unpredictable.

That’s a lot of caregiving!

I hope you–nor I–have to care give all those people, but as you can see from the list, you’re most likely going to have to do it again.

What Have You Learned From Caregiving The First Time?

(Here’s a few of mine)

• I learned to get prepared and organized–from the get go
• I learned to protect my time, heart, and energy–every day
• I learned not to fret about every little thing said or done–neither what I did or what was done to me
• I learned not to give doctors or other medical personell carte-blanche. They don’t love my family member like I do
• I learned not to let caregiving (people or the process) control me or my life
• I’m not so afraid of the end of life–I hope to embrace this tender time and hold it sacred

If caregiving is a marathon, then the next time I vow to turn around and tell the bear to back off~

You can’t worry about your caregiving future. 

Live life now. Live big and with open arms. If caregiving comes your way again, it won’t be the same experience. It will teach you new things.

If You’re In Between Caregiving Times:

• Be totally selfish. Take care of you. Recoup.
• Do the things you put off. This won’t replace the loved one you lost, but use this time to keep your promises to yourself.
• Look enough ahead that caregiving won’t completely side-swipe you
• Do the prep-work: get those living wills signed, know where those important papers are, talk about long range plans
• Put your family on notice–let them know just because you gave care once doesn’t mean you’ll automatically do it again

If It’s Your Spouse You’ll Be Caregiving Next

Caregiving your spouse is different. It kicks up all kinds of emotions. Be gentle on yourself.

You might feel scared for your own future. Angry they didn’t take care of their health before now. Weepy–your heart is wrenched.

How much time do you have left? What is the quality of that time together?

This is a very intimate, tender experience. Be present. Spousal caregivng isn’t about managing the situation–it’s much closer to the heart. at some point, let the rest of life fall away.

Caregiving is a Part of Who We Are–It’s Not The Whole of Who We Are

You are actually a good caregiver to stay outside of the emotional hurricane of caregiving.

You don’t prove that you love someone by being miserable with them.

Many times, our loved ones want us to feel what they’re feelings.

You know the old cliche’, “misery loves company?” It’s true. If we’re depressed, we tend to cloud the atmosphere and dare anyone to be cheery. It’s difficult to live with a person who has Alzheimer’sand not get pulled into the vortex of lethargy, melancholy, and numbness.

Caregiving is a Natural Part of Family Life

We just recently came up with this fancy name.

We’ve always had mothers, fathers, spouses who need us. Family caregiving was just the norm–and it was just being a family. The kicker now is how long we’re all living!

Enjoy Life–Enjoy Caring for Those You Love–And Don’t Over-Think!

Keep it natural. Love those who are in your circle.

Love life and appreciate your health, your family–and don’t over-think it all. Don’t try to do it all, be it all.

Care Give Loose!

Life is constantly changing. We have to learn to love and let go, love and let go.

(If I figure out how to do this, I’ll let you know).

~Carol D. O’Dell

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

available on Amazon

Family Advisor at www.Caring.com

Syndicated Blog at www.OpentoHope.com

 

 

 

 

Are You Sick of People Telling You to Take Care of Yourself?

Most caregivers I know are rsick of being told to take care of themselves.

It’s not that they don’t appreciate the advice, but I’m sure they feel like saying something along the lines of…

If you’d like to come over and give me a long weekend off, I’d be glad to take care of myself.

Or

And, how do you propose I do that on the energy of an anemic sloth?

Taking care of yourself takes time, energy, sometimes money, and resources.

These are commodities that most caregivers don’t have a lot of.

How do you get energy if you don’t have energy?

Ask yourself, what’s draining me? I mean other than 24/7 care and talking circles with a person who has Alzheimer’s. Mental energy drainers, crazy makers (meaning your relatives and other uninformed people) drain more energy than the physical work you do.

Make a list of crazy makers–from the irritating neighbor who fusses at you because your dog barks (at three in the afternoon) to the unhelpful, disinterested nurse who refuses to simply call in a prescription for your mom even though you know she has the same condition as the last time she went to the doctor.

Now that you have your crazy maker list you’ll hear an alarm going off in your head the next time you’re dealing with them–you’ll be able to detach before your emotions get tangled in with their chaos. Limit the amount of conversation you have with crazy makers. Get in, get out, that’s my motto.

It takes energy to get energy.

I hate this one, but it’s like exercise. You can’t wait until you feel like exercising or you’ll never do it.

You exercise in order to feel like exercising. Shut off brain. Don’t over think. Just grumble and move, grumble and move. Ten minutes in, and those lovely endorphins just might kick in. Tell yourself you can quit in ten minutes. I bet you’ll want to continue. Most days. Some days.

Are you really physically tired?

You might not be.

Caregivers suffer from monotony. Most of their days are too predictable. It’s boring. It’s not stimulating. You’re still young, healthy and your brain and body needs activity. You’re probably acting like your elder loved one–like you’re 87 with arthritis.

Mentally separate yourself from your loved one. Not in a mean way, but realize that you are 20, 30 years younger. Move like it. Talk like it. Don’t let an atmosphere of depression pull you down. 

Research has shown that if you’re tired, it may be because the other side of your brain needs stimulating.

If you’re physically tired, you might need mental stimulation–a game of computer solitaire, a crossword puzzle, learn a language, have a conversation with someone who challenges you. That way, you’re using the other side of your brain–the side that’s been lethargic.

If you’ve been working through a problem in your head, (even having an argument, figuring out care arrangements, or worrying about something), then you may need a physical activity–clean out a closet, wash the car, scrub out the frig. Your body is yearning to move.

Do you know why we yawn?

It’s not just because we’re tired. It’s that our breathing slows when we’re tired and we’re not getting enough oxygen. Our body triggers us to yawn so we’ll take in a deep breath and fill up with oxygen. Cool, huh? Even our body knows what we need. Maybe you need to “yawn,” metaphorically that is, and get some life sustaining oxygen flowing again.

So, brass tacks here’s how to take care of yourself when you don’t want to be told to take care of yourself:  

• Tell those do-gooders “You should take care of yourself” folks to back off! Uhless they’re willing to anty up, it’s not fair to just tell you what to do and not help.
• Name those crazy makers and decrease how much time you spend with them.
• Do one thing you’ve been avoiding–calling the bank, deworming the dog–nothing zaps energy like dreading something
• WALK or STRETCH for ten minutes. Not because you feel like it. Gripe all the way through, I don’t care. Just do it!
• Do you know how much energy it takes to hold in our emotions? Go to your car, shut the door and have an imaginary tell-off session. Write a really nasty letter. Scream.
• After you’ve said all those cruel and probably deserved terrible things, it’s time to pick your words and confront someone who’s really been bugging you. Start with, “When you ____________, I feel ___________. Then offer a solution. Next time, please ______________.  Then walk away. Refuse to get into an argument.  As scary as this is, this little script can save your life. Unresolved emotions contribute to heart disease, so unplug those arteries and stand up for yourself!
• Create a time structure you can live with. I know people who get up at 6:00 because their loved one needs a pill. At six a.m.? I’d much rather be on a 8, 12, 4, 8 schedule. You’re the caregiver and consistency is important, but you should decide and dictate the care. Not them. Eating at the same time, taking their meds, and going to bed at the same time is important for everyone–but make it live-able for you.
• Ask yourself each day: “What was the best part of my day?” It can something small, like having cream for your coffee. Most of the time for me, it has to do with nature–a cardinal that bathed in the birdbath outside my kitchen window. It might be a thank you or a compliment, a surprisingly helpful bank teller. Once you start this, then you’ll want something to be thankful for–you’ll be looking out for it–creating it. Gratitude is good for the soul.

That’s it. Nothing big or earth shattering:

Tell those do-gooders to back off. Decrease crazy maker time, walk and stretch, create a schedule you can live with, deal with something you’ve been dreading, tell someone how you feel and offer a solution, and be grateful. That’s the beginning of a great life.

Also know that if you’re changing gears–if your loved one has just taken another downward step–their Alzheimer’s has gotten worse, they don’t know you anymore, you think you’re entering into the end of life–or if your’e grieving–then chuck all this well meaning advice and survive. Your soul is aching. Do the best you can. I cared for my mom until the end, and I know that there are times when you can’t do anything but breathe–and do what is at hand. No guilt. Get through.

Caregiving has its challenges, but seeking answers to these challenges might just improve your life.

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated blog at www.OpentoHope.com

www.kunati.com/mothering Kunati Publishing

Do You Have a Sanctuary?

Caregivers,

Do you have a place to go?

A sanctuary?

If not, it may be a big part as to why you’re stressed and resentful.

Caregiving invades your space, your head, your time–you don’t always get to say when you’re needed.

I pulled many a “late night shift” with my mom.

My mother had Alzheimer’s and Parkinson’s and not only did she have Sundowning, a condition in which people with Alzheimer’s get more aggitated and have more energy as the sun goes down–and on into the night, but she simply didn’t need much sleep–or her body wouldn’t let her sleep. (Here’s a post I wrote about my experience with sundowning).

It’s not like we could make it up during the day.

I was dragging. That made me miserable, fussy, and I tended to overeat. Why? Because studies have now shown that obesity is linked with lack of sleep. We tend to munch all day because it gives us something to do, causes our brains to perk up, and since sugar is almost always involved, we’re pumping ourselves up like we’re climbing the highest point of a rollercoaster–and then plummeting to exhaustion.

Maybe what you need isn’t to just lie down. 

It’s a renewal of your spirit you’re hungry and longing for.

You don’t have to be religious to need a sanctuary.

I love that I happen to live in a bird sanctuary area–the Timucuan Preserve. I love the thought that animals are held as sacred and that an area is designated for them.

But shouldn’t we humans create our own sanctuaries? What exactly is a sanctuary?

The word, “sanctuary” means:

Source: Webster’s Revised Unabridged Dictionary (1913) –The spelling has changed since then.

Sanctuary\Sanc"tu*a*ry\, n.; pl. Sanctuaries. [OE. seintuarie, OF. saintuaire, F. sanctuaire, fr. L. sanctuarium, from sanctus sacred, holy. See Saint.]
   A sacred place; a consecrated spot; a holy and inviolable
   site.
Two of the definitions include:
c) A house consecrated to the worship of God; a place where
       divine service is performed; a church, temple, or other
       place of worship. A place to keep sacred objects.
   (d) A sacred and inviolable asylum; a place of refuge and
       protection; shelter; refuge; protection.
Operative words: Refuge. Sacred. Shelter. Protection.

How to Create a Sanctuary:

What is sacred or holy to you?

• Gather a few objects–a photo, seashells, stones, your mother’s broach, your dad’s pocket watch, your baby picture.
• Grab a basket or a box and walk around your home and hard. Gather anything that interests you. Your sacred objects will change over time. Just get it rolling for now.

Find a place:

• Where in your home or yard feels “safe?”
• Where can you have some privacy? Where can you relax?
• Place a table, a desk, a chair, a cover at this place. If it’s outside then create a box of your sacred items that you can carry out with you.
• You might also want to include a journal and pen, micro-cassette recorder, a drawing pad, candles, a rosary–any object that helps you figure out life.
• Go frivolous~ don’t think a sanctuary is all serious! Take your ipod along. Dance! Paint your toenails and read a magazine! Navel gaze. You may just need some extended down time–staring into space.
• There are no rules. Do what you feel like doing. We’re taught not to trust our feelings. That if we got to do what we felt like, we’d all be drug addicts, cheaters who eat nothing but Oreos. Trust yourself. Do what feels right. Sleep. Stare. Rant. Cry. Sleep some more.
• Your sanctuary is off limits to everyone else. Make your boundaries. No interruptions. No phone calls. Unless there’s blood and lots of it–you are not to be called away from your most important work–taking care of you.
• You’ll be surprised, but your family and friends will respect your space–if you do. This is a great example for your children.
• Don’t expect “results.”
• This isn’t a magic box. It’s a place to rest or even to rejuvinate. Recenter. Calm down. Work things out. Place no expectations. This isn’t like Weight Watchers for the soul. You don’t have to weigh in and measure if you’ve gained or lost since last week. Just be.
• You may need to use your sanctuary to work out your anger, hurt, and resentment. One thing I do when I’m really upset is to write it all down on scraps of paper, say it outloud, and then burn it. It helps to watch your anger turn to ash.

Pick a Sanctuary Location:

• Some people like clearing out a closet and placing a chair, pillows, and a small table and light in their “prayer closet.” Oprah recently featured a sanctuary closet that was really decked out. 
• Others like to go outside–they hide away in the nook of the yard and get the benefit of nature to heal them.
• One friend keeps her “special box” she calls it in the car. She literally walks out the door and goes and sits in her car. Her family is less likely to find her there and she feels safe and cocooned. She can scream, cry or laugh in her sound-proof sanctuary.
• For some, it’s in the bathroom. They retreat eat night to the tub–they keep candles, soaps, and a journal on hand. They know that being naked will most likely keep people away! Hey! Whatever works!
• Be like my cat and change your sanctuary every once in a while.

Cats are great to observe. They seem to make their spots seem sacred. My cat picks a spot and goes there after breakfast each morning. He gives himself a luxurious bath, folds in his little paws and I swear, if cats could pray, I’d think he was praying. Then, he takes a nap.

This week, his spot is under my birth grandmother’s rocking chair in my bedroom. He tends to pick a spot and goes there for 3-4 weeks before picking another spot. Recently, it’s been in the back of my closet–that’s when he doesn’t want to be found. A few weeks ago, it was on a chair next to the dining room windows so he could enjoy the sun. I knew where he was, but he’s also quiet and hidden away enough to not invite attention. Smart cat.

What Do I Do in My Sanctuary?

First, let’s address what you DON’T do.

• You don’t take care of anybody but you.
• You don’t stay busy just to avoid what’s bothering you.
• You don’t have your thoughts constantly interrupted with the chatter of life.
• You don’t allow yourself to be bombarded with the demands of every day life.

This is What You DO:

Rest. Think. Imagine. Work out hurts. Cry. Zone out. Learn (maybe take a book?) Find your joy.

If it feels odd at first because you’ve never done anything like this, then let it feel odd. Your sanctuary practice will be even more necessary at the end of your loved one’s life–and especially during your time of grief. Create this space now so that you’ll have a place to run to when you really need it.

Like my cat, I change my locale every once in a while.

Right now, it’s on my back porch on my parent’s glider (they had it since I was adopted in 1965). I have a stack of books on one arm, and I recently bought a big cushion–in case I get sleepy. About 9am you’ll find me there with my 2nd cup of coffee, my journal, a few magazines, a no doubt, a couple of dogs by my feet.

I’m a Guy and This Sounds Lame:

Does it?

My daddy had a sanctuary. He called it a garage. He built it himself. He left for his garage every morning after breakfast (he was retired at this point) and after his game shows. He putzed, worked on a broken lamp, put in a small bathroom. He listened to talk radio. For the most part, he was alone–although a few friends would come and visit. Mama and I came down but never really stayed long. It felt like we were intruding.

He’d come back to the house with a smile. He’d had his time to himself. He smelled of sawdust and linseed oil–and peanuts and Coke he kept in a cooler to sustain him throughout the day. He came back relaxed because he allowed himself this break. He didn’t have to listen to Mama nag or me talk incessantly. He came back ready to be a dad and husband. Smart man.

Caregiving stress is a real issue with real ramifications to your health and realtionships. Sometimes we unknowingly contribute to our own stress by always being on call. Sometimes it’s a power thing we’re unaware of, sometimes it’s fear, sometimes it’s just a plain ole’ bad habit we can’t figure out how to break.

You need a sanctuary–caregiving or not.

You need to know that the world won’t fall apart because you take a half an hour and pull inward.

Like Daddy, you’ll come back refreshed.

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated blog at www.OpentoHope.com

Kunati Publishers, www.kunati.com/mothering

Grieving and End of Life: Help! I Feel Like I Killed My Mother!

“I feel like I killed my mother.”

That’s what a friend said to me the other day.

Her mother’s been gone about six weeks.

My friend, her dad, and her other siblings made the decision to end life support.

It wasn’t a decision anyone wanted to make.

Her mother had had cancer for years. She had recently got pneumonia, and she had been struggling to breathe for years–and she was in pain.

She had signed a living will, but still, her family struggled with what to do.

They didn’t want her to suffer. Hospice agreed.

Yet six weeks later, I looked at my dear friend and I knew the thoughts, feelings and emotions she had grappled with. She looked so vulnerable. She dearly loved her mother and this was eating her up inside.

“Did we do the right thing?” She asked.

She’s a nurse. She knows logically that it was best, that her mother’s body had gone through enough. She was at peace with her faith, and yet when it’s your loved one, logic doesn’t help a lot.

I reassured her she had done the right thing.

I also told her that I had felt the same way.

My mom was 92, had Parkinson’s and Alzheimer’s. She had forgotten who I was, how to swallow, what food was, and I chose against a feeding tube, reasoning, what good would it do to keep her body alive when her brain didn’t know anything or anyone?

And I too found myself walking around with the sheer panic that I had killed my mother.

I should have called 9-11. I should have demanded hospice stay with us. I should have put in the feeding tube. I should have fought harder to keep her here.

Those were my thoughts. Years of caregiving had worn me out. I couldn’t fight death. I don’t think I should have. My mother had a full life–marriage, a career as a minister, a child and grandchildren, a home and friends. She was 92. Life was good, but it had little to offer her at that point.

What kind of life would she have had? Who was I to say?

Families face these decisions and the ramification of these decisions every day.

Ultimately, no matter what a person puts on paper, their loved one has to agree, has to decide.

I sat beside my mother in those last weeks of her life. I wiped her lips as she slipped into a coma. I made sure we had all said our good byes. I kept her warm and dry. I read her the Psalms. It was a quiet time.

Peaceful, grueling. I had to sit with my decision. My mother was dying right in front of me. 

Hospice came and went–several times a week a chaplain, nurse, CNA would come in and help out–and then they’d leave us.

It reminded me of those early weeks after I had my babies.

The relatives had all come, brought presents, taken pictures and left.

My husband had to return to work. And there I was. Just me and a new baby and quiet house.

At times, I wanted to yell out the front door, “I don’t know what I’m doing in here!”

How to Deal with Feelings of Guilt and Regret:

• Attend a berevement group. Most hospices or hospitals have one–and you don’t have to have used hospice to attend.
• Talk to others who had lost loved ones and have had to make end of life decisions. You’ll see you’re not the only one.
• Write your loved one a letter explaining how much you love them (love is never past tense) and difficult it was, and how you hoped you made the best decision.
• Realize you don’t have the power to take a life. That’s giving yourself more power than is your right. You didn’t murder your loved one. You made a tough decision to let go. Their life was/is in higher hands.
• Don’t get caught in a thought vortex where you continually recreate the last days, hours, minutes. This will do you no good. Get busy. Stay busy. Wear yourself out–with housework, yardwork, an art project, anything big that consumes you. There’s a time to sit with your grief and there’s a time to wear yourself out and not over-think.
• Give yourself time. This is a very normal feeling. It’s part of grieving–even though it’s not one of theKubler-Ross system, it’s embedded in there. You won’t feel this way after a few months or years pass. Trust me.

Eventually you’ll come to a place of realizing that death was eminent. It isn’t a matter of weeks or days or minutes.

‘The time our body leaves this earth and the time our spirit leaves this earth may be slightly different. Letting go and allowing it to come is a loving act of faith and resolve.

Eventually, this will come.

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated blog at www.OpentoHope.com

Kunati Publishing, www.kunati.com/motheringmother

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Are You Afraid You Might Have to “Pull the Plug?”

Making end-of-life decisions for a loved one is a very scary thing.

Yet families are the ones that most often decide.

This is a part of caregiving we didn’t think about–or think all the way through.

No one wants to feel responsible for deciding if another person lives–or doesn’t live.

But you may find yourself in this very situation.

What do you do? How do you make such a monumental decision?

What if you decide wrong?

What if other family members disagree with you?

How will you live with yourself?

These are common questions that can absolutely paralyze you.

How do you decide?

First, if you’re not quite to this point, then do everything you can to get your loved one to sign a living will. Force it (Lovingly coerce) if you have to, if you feel you’re coming to the end of your window of opportunity. You’ll be glad you did. I highly recommend The Five Wishes living will.

If you cannot get them to commit to something on paper, then listen, take notes, and then decide on their behalf. They are essentially asking YOU to decide by them NOT deciding.

Know that you are not killing your loved one!

I cannot stress this enough. One of the greatest gift that working with hospice can give you is to reassure you that allowing someone to die is not the same thing as killing them.

Doctors will in many cases make you feel guilty. Their “oath to save” can get in the way of their humanity. I’m not trying to bash doctors, but it’s as if they don’t use their higher intelligence, intuition, and good horse sense to realize that we all will die–no doctor has ever saved a person from dying.

I know how scared you feel. How angry you are to be put in this situation. 

I know what it’s like to feel like you’re carrying a cement block of guilt in your chest wherever you go.

My mother, who had Parkinson’s and Alzheimer’s was coming to the end of her life. She was 91, almost 92 and she had been living with me for the last year and a half of her life (and mine). It was tough.

My mother went from being unbelievably vivacious, cantankerous and demanding to being “lost” in Alzheimer’s, out of control, didn’t know me, and my caregiving had come down to sad to say, I felt as if I were caring for a wild animal at times.

I don’t meant that offensively–please don’t take it that way. I just felt as if I could not reach her. She was not there. I was performing a set of duties or functions, and that the mother I knew laid safely tucked away in my heart and my memories–but she was not this woman in front of me with a void in her eyes and an almost blankness to her soul.

She had signed a living will and had specified that she didn’t want a ventilator, but she did want pain medicine. The problem was, that was about the extent of it. She wasn’t in pain, she didn’t need a ventilator at the time, but the question of a feeding tube wasn’t addressed.

What was I to do?

I was beyond the end of my hope.

I had to decide. I was an only child. I was not about to pull in out of town relatives (none of whom had been involved with her care in the last 18 months) to then put their two cents in.

It was up to me. Hospice helped alleviate some of the guilt. They gave me–and my mother permission to let go.

That’s the day I became a woman. An adult.

Not the day I got married, not the days birthed my children–it was the day I had to decide how much longer my mother would live.

I knew rationally I was not kiling her. Parkinson’s, Alzheimer’s and heart disease had done that. But I knew that I could shorten her time. That was in my control, whether I liked it or not.

I thought long and hard about the feeding tube. What it would mean for her, for me, for my family. I knew the toll my caregiving had already exacted on all of us. But this was not a decision I felt I could necessarily make based on the good of the many…I had to decide about my mother’s life.

Whew. Tough. I did not want this. I did not want this decision. This responsibility. I wanted to run. Literally run, but I couldn’t leave my husband with this–as unfair as it was for me, it was even moreso for him.

It came down to this:

Even with a feeding tube, I couldn’t reverse the effects of these diseases. She would still have Parkinson’s. Still be lost in Alzheimer’s. Still had already had three heart attacks.

It was time.

Did having faith help?

Yes, it did, but I can also say that just about everyone fears and dreads death–we’re meant to love this world, love our bodies, our life and our families. Letting go is hard–no matter what’s to come.

Ironically, deciding wasn’t to be the most difficult part of my journey. It would be living with my decision. Sitting beside her as my choice played out before me.

I stop here not to be coy. Not to play a writer’s trick on you. I stop here and will pick up with this blog tomorrow because I feel like–if you’re here, or you know that you will soon be making these kinds of decisions, that I’ve given you enough to mull over for now.

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated Blog at www.OpentoHope.com

Are Out of Town Relatives Telling YOU How to Care Give?

I spoke at Haven Hospice in Gainesville, Florida yesterday–and the speaker before me was Dr. Slayton who is also a caregiver to his 87 year old father. He spoke of the “Out of Town Hero Syndrome.”

Everyone knew what that was–it’s when out of town relatives swoop in town and begin to tell YOU how to care give.

They come once or twice a year (thank goodness, not more) and rearrange everything from your medicine cabinet to your car’s glove compartment while proceeding to tell you (in subtle and not so subtle back stabs) how you could, should give better care–to mom or dad.

You’re there 365 days a year. They’re there for 10.

You’re nice at first. Keep peace, you tell yourself…but by day three you’re about to blow a gasket.

If your loved one has to go to the doctor or is in the hospital or in hospice and it’s near the end–then it’s ten times worse. They run the show. The doctors and nurses speak to them. Especially if they’re an older sibling–then you’re really in for it.

By the time they leave you can barely find your own socks.

You’re angry, frustrated–and worse–your confidence has been undermined.

You start to doubt yourself.

You just want to quit. Fine then–take mom–take dad.

“Do it all yourself and I’ll come back this time next year and boss YOU around for ten days.”

That’s what you’d like to say.

On top of that–your mom or dad like them MORE.

They get the smiles, holding hands, pleasantries you haven’t seen in months–they sit at the table and gab like you do this every night and you feel like such a hypocrite. They’re all in the livingroom talking after dinner–and where are you?

Loading the dishwasher.

I didn’t have siblings, but I experienced this with several relatives who came into see mom–twice–once each in more than two years.

I went off for the day to give them time alone and when I had come home this person (no names) had reorganized my pantry and all my kitchen cabinets. She took me in there by the hand and showed me everything she had done and explained why her system should work better. I had to stand there like a ten year old in trouble and agree, yes, her system was better and I was a piece of …well, you know.

I was so stressed, angry and nervous by the time she left I thought I’d collapse in a heap on the floor when she pulled out of the driveway. On top of that, I knew my mother had complained her head off about me–not taking her to church, drinking wine (my mother was a fundamentalist minister), watching movies with curse words, letting my daughters wear those short shorts…you name it.

The next time this happened was with a good friend of mine. My mother ate her up like she was homemade vanilla ice cream. They chatted and laughed–my friend washed my mother’s hair and did her nails.

Made me sick.

I had asked my friend to come down to help me and this felt like betrayal. I know she didn’t mean to but that’s how it felt.

I felt judged–and poorly lacking.

Mother hadn’t said a kind word to me in weeks and now she was a geyser of compliments.

Then I heard them whispering. Mother was crying (fake crying) and saying she wished I were sweeter, kinder, more patient, that she didn’t know what she had done to make me act so cold to her.

My friend came out and a very concerned voice told me I needed to make up with my mother and forgive her.

I thought my head would split open. I felt betrayed by everyone.

Mother was up to her old manipulation tricks–and I knew this full well having experienced it countless time in forty years.

I told my friend she really had no idea what was really going on here and that I needed her to respect and trust me.

Later, she apologized. Her father got Alzheimer’s and she dealt with her own family issues. She really didn’t have anything to apologize for. I knew how mother had played her, but I understood.

I share all this with you to say this about relatives in town or out who make you question yourself:

Know deep inside you are a good person–a good daughter, son, spouse–and let no one shake you on this

Stop worrying about what other people think about you and your caregiving.

It’s none of your business what others think of you. (How freeing is that?!?)

You’re care giving because you believe it’s the right thing to do. You have to give care the way you can–the way you can be consistent, they way that’s right for you and your loved one.

Stand firm on this and don’t listen to other’s opinions. 

Unless they have done this for as long as you have, they can’t possibly comprehend the level of sacrifice, committment, love, tenacity, and exhaustion you’ve endured. Caregiving is a marathon not a sprint.

You may feel yourself pulling away from people.

That’s part of caregiving.

You’ll naturally pull in–for good and not so good reasons.

You’ll get tired of explaining yourself.

You’ll get tired of trying to be nice to people.

You’ll get tired of feeling that everything you do is up for scrutiny.

You’ll get strong and stop needing others to validate you or what you’re doing.

That’s the bottom line.

Your relatives, friends and neighbors will intimidate you just so far and then you’ll find your backbone and stand your ground.

This is one of the best lessons of caregiving that can change you and how you deal with others for the rest of your life.

You will become strong, independent, and do what you need to do and you won’t give a rip what others think. They have no idea.

The anger and hurt will dissapte. In time.

These situations and people that threaten you will give you a gift–you’ll find your own confidence.

You’ll be in your own quiet center.

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

Kunati Publishing, www.kunati.com/caroldodell

Family Advisor on www.Caring.com

Syndicated blog on www.OpentoHope.com