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Posts Tagged ‘hospice’

I’ve been wanting to do this for a while–write to the future me–about how to live and die. I witnessed my 92-year-old mother as she died and I am profoundly grateful for that experience. I learned so much from those last years together–and that when it’s my time to go, I want to go out easy with a grateful heart. I even want to be a little  jazzed about whatever comes next. If that’s to happen, it must start now. You can’t get bold in those last moments if it’s not a part of who you are all along.

There’s a great site for just such a letter. It’s www.FutureMe.org.

It’s a place to write yourself letters–letters of encouragement, advice, or just to capture where you are today so that the future you and remember, really remember. I go there often–leave myself little notes–remember to laugh out loud at least once a day–to take a risk–to ask forgiveness. You can email it to yourself at any future date.

So here’s mine–about how I want to face those last hours on this earth. I’m hoping that I will have to email myself this same letter again and again–that I’ll have a bit of time to taste the sweetness this world has to offer.

But who knows? So I better get busy…

Dear FutureMe,

I have no idea when your day will come, but when it does–be brave. Meet the next big adventure with a smile and a “let’s see what’s next” kind of attitude.

In the meantime, tell people you love them, be grateful. Laugh. Give. For-give. Embrace whatever comes down your path–where ever you live, whoever you’re with, whatever it is that you do–give it your whole heart.

All I know is life is full of change. Switchbacks, surprises, knock your breath out and catch your breath moments–gather them all.

You’re going to lose people you love, and nothing can stop the hurt that’s to come. Try to let all the bitter disappointments, rejections, losses, and sorrows to pass through you. We have to let go and as hard or impossible as it might seem, that’s what life asks of us. Glean their truths without holding onto bitterness or cynicism.

Learn. Grow. Never settle. Forget this “I’m old” crap. Not everyone sits in a recliner and gives up, so hang out with those who inspire you. Be bold! Do the unexpected. Learn to fly a plane at 80, volunteer at a free clinic in Ethiopia, paint some kick-ass graffiti or climb the Eiffel tower–whatever grabs your heart and won’t let go.

Trust that what you want–wants you.

Leave this world a better place than you found it.

And when the time comes–be at peace–whether you’re  garden dirt (which is a lovely thought, to help flowers and trees grow) or star-dust in a distant galaxy, or fishing by a lazy river with Daddy–trust that whatever is next, is exactly as it should be–and that for me is the definition of Heaven.

When the time comes for you to go, this is what I want you to do:

Take a deep breath. Remember being on a boat. You’re coming back from a day trip–Mexico or the South of France–and you’re on top. You’re a little pink with sunburn, a little buzzed on rum punch, and the wind on your skin feels oh so good. Phillip is beside you and he’s holding your hand. He feels strong and warm and you lean on him. The sun is setting but it’s so bright that you close your eyes. All you can feel is the hum of the boat, the rhythmic bounce of waves, the occasional salt spray that cools your face.

This day, this life, was everything you ever wanted. You are full. You are exhausted and spent–in the best of ways. You think of all those you love–and you know without even opening your eyes that they’re surrounding you–those who are still on this earth and those beyond. You feel their love. They’re here to celebrate you.

And all you can feel is deep, sweet rest and the boat and the wind–taking you home.

Love big. Laugh bigger.

Life is oh so sweet.

~Carol

On a boat, off the coast of Cassis, France

Carol D. O’Dell

www.caroldodell.com 

 

Author of Mothering Mother, available on Kindle and in hardback on Amazon

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Being a full-time caregiver for several years and going the “last mile”has taught me a thing or two. I allowed (not just physically, but emotionally and spiritually) my mom to pass in our home and that has changed me. At the time, when I was in the thick of caregiving 24/7 and having to get up and play “prison guard” to my mom who had Parkinson’s (thank God because it slowed her down) and Alzheimer’s (which revved her up) and heart disease (just to throw another kink in the game plan), I spent most nights hitting my bed only occasionally as if it were a trampoline. In those grueling, full of worry, can’t make it better no matter what I do, nights and days I wondered at times if I would survive. I did, and I’m profoundly grateful for this life-changing, push me to the bitter edge experience. This gal learned a thing or two.

  • I learned not to be afraid of disease. Parkinson’s and Alzheimer’s I’ve seen what they can dish out, and it’s not pretty. They’re bad, don’t get me wrong, but I know the terrain and I find we’re most afraid of the unknown. I hope to figure out how to deal with whatever grenades life throws me.
  • I want to grab life with gusto. No guarantees in this world. So spend your money, take the trips, laugh with friends. Love big and hard and take risks–the good kind. Do it now. Arbor day, Chinese New Year’s–life’s for celebrating in big and little ways.
  • Stand up for myself–and for those I love. Caregiving comes with a zilliion big and little decisions. It’s easy to be bullied by the medical community, by other family members, by the “shoulds” in your head. I learned to stand up and stand behind my own decisions. It’s easier to blame others, and it takes a big girl (or a big guy) to have the guts to stick to my own convictions.
  • Love what is.Pain comes from the fight to make things a certain way, when we can’t let go of what was and walk across the bridge to what is. I thought my mom was back in my life in such a big way so we could “fix’ our relationship–work through our hurts and misplaced expectations. Wrong. I learned to love her, to love me, to love us–as is.
  • Laugh–or scream–but do something to release those runaway rollercoaster emotions. It’s time to stop holding it all in. Sorrow, guilt, frustration, resentment–it’s all there for a reason. They’re clues to help us know what’s going on in our heads and our hearts. But they’re toxic if they’re stuffed down and not allowed to breathe.
  • Do something I’m proud of. It’s time to leave the world a better place than I found it. I want to be known for something. For making a difference. I want some small sliver of the world changed for the better–because of me. I’ll let you know what sliver grabs my heartstrings next.
  • To stop caring what others think. Get a nose piercing, cut my hair down to the nubs, paint my front door purple and my mailbox lime green, dance under the stars, speak up and speak out when I see an injustice–that’s how I want to live now. That’s how I want to be remembered. Conformity sucks. In the words of Nelson Mandela (I believe he quoted it from Marianne Williamson), “Why are you trying to fit in–when you born to stand out?”
  • Nature heals. Nothing brought me more comfort than the sparkle of light on water, a bird’s wings whirring overhead, a breeze lifting my hair and reminding me to stop for a moment and take it all in. When sorrow slams into my chest I hope to remember to fall into the earth and ask it to take from me what I cannot bear alone.
  • To tell our stories. I wrote every day I cared for my mom. I wrote to stay alive. I wrote to figure out life. I wrote to remember our journey. Those journals became my book, Mothering Mother, but I wasn’t writing to get a book deal. I was writing to capture moments, to pick them up like a prism and look at each facet.
  • When death comes, I hope to dance my way to the next realm, not fight it. I hope I’ll have a bit of a heads up and let go of this world with a dash of grace. I hope I’ll take Chief  Sitting Bull’s words and shout to the universe, “It’s a good day to die!”

That’s what I’ve learned. Oh, I can still be shallow, petty, and mean-spirited at times. I still lose my way–but not for long. Caregiving has changed me. For the better.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

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There came a time when I knew my mother was dying. It wasn’t necessarily a physical symptom, it was a gut feeling. I was scared–even frantic. How do I do this? If you’re a caregiver it’s likely that you will eventually face the last turn in road. Your loved one will entering the dying process and as death draws near you may call or be recommended for hospice.

I felt sad, cornered, overwhelmed, grieving, angry, panicked, even numb, and if I’m really honest–almost relieved. I was not only losing my mother, I was losing a part of me.

How do you know when the end is near?

Do you wait for a doctor or nurse to tell you?

Do you check into the hospital?

Who do you call–what do you next?

All I know is that I had been caring for my mother for a number of years. I was the one who fixed her meals, bathed, her, listened to each breath, monitored everything from her moods to her medicine.

When no one else knew–I knew.

I asked the doctor if we were ready for hospice. He hedged. A few weeks later, I insisted.

Hospice came in and although my mother qualified they didn’t think that death was imminent. Still, something in me knew it wouldn’t be too much longer.

Mother rallied–I felt duped–then she plunged again. In less than six weeks from the time I made that call my mother took that last turn. For three weeks or so, she lingered. She forgot how to eat–and I let her. By that I mean that I chose not to insert a feeding tube. That’s a highly personal family decision, but it was the right one for us. It wasn’t an easy decision by no means–and I knew I’d be the one to witness every breath, every moment. And I took on that role willingly.

I received one of the greatest gifts of my life in those quiet, grueling weeks. My mother taught me how to die. She gave me front row seat–something not many of us in our modern society gets the privilege of witnessing. But I ask, how else will we learn?

How do you know when the end is near?

It’s instinctual, guttural, spiritual, biological–but you’re also subconsciously weighing every piece of information you’ve gathered–as spouse, daughter, son, or friend. You’ve been there all along and even if you’re not medical, you know when a shift has occurred. You’re picking up on cues you’re not even aware of.

Trust that you may know before anyone else knows–and you might not be able to explain why.

In the end I was fully present. Scary–yes. But the frantic fear was gone. It was tough beyond words, but it was also good–necessary–and for me, holy.

Few of us have another way out of caregiving, especially for our elders. We all must die.

Knowing the end is near is a rare gift–one I’m profoundly grateful for.

Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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Did you know that 40% of people over 45 don’t have a will? Below the age of 45, the percentage of slackers is even higher. Even caregivers who know their loved one has limited time is hesitant to bring up the living will and will discussion.

Is is because we think we won’t die–or we’re just slackers that put things that are a hassle or uncomfortable off–we’ll do it another day? I’m going with a little bit of both, but leaning toward the slacker scenario. Procrastination is human nature.

It’s not all about the will and who’s going to get your money.

As important as it is to spell out who gets the silver service, I think it’s even more important to say how you want to die. Let the relatives squabble over your stuff–who cares–you won’t be able to make them happy no matter how fair you try to be.

But saying how you die is smart–selfish in some ways maybe, but smart. 

That’s where the Five Wishes come into play. The Five Wishes is a document in which you get to state if you want a feeding tube, if you want a respirator to help you breathe, if you want pain meds, if you want a DNRorder (do not resuscitate) if want to die at home, or be taken to a hospital or hospice center. You might also include whether you would prefer to be buried or cremated, placed in the cemetary with your relatives, or scattered off the back of a sail boat. You get to decide whether you’d like the Beatles played at an informal gathering to remember you, or whether you’d like to have a service at the family church or synagogue.

Now this is one important document. You can also place this kind of information in your regular will, but many times that document doesn’t get open until you’re getting your hair and make-up on at the funeral home.

So for all you slackers out there (including me) here’s a handy list to guide you:

  • Put all your important documents in ONE place and tell your loved ones where it is–safe, top drawer, safety deposit box, etc. Make it known where these important papers are.

The important papers you need are

  1. All your insurance policies–house, car, medical, and life.
  2. All your loans and current bills. Be sure to include passwords to all your accounts.
  3. The Five Wishes, or at least a letter that states what your wishes are. Include lots of choices and preferences so your loved ones aren’t trying to figure it out without a clue.
  4. Make a list of items you’d like to give to people and other personal thoughts.
  5. Consider an ethical will–it’s a document where you get to share your heart, your philosophy to life, your blessings for those you love and how you’d like to be remembered.
  6. YES, YOU NEED A WILL. If you don’t have a will, anything you do have will be distributed by the discretion of the courts according to the laws of your state. On top of that, your loved ones will have to pay for this probate service, so get that will made. Consider a trust if you have children under 25. Even if you’re married, you still need your own will. If you own a business, you’ll probably need to hire an estate attorney or elder-law attorney.
  7. Even if you’re married or have a legal partner, then it’s important to have both of your names listed on the house, car, etc. This can save time and headaches.
  8. You can get a will online, but it’s smarter to pay out the money and do this with an attorney. For most people, this will cost you $250-$500 and you’ll be set and have the peace of mind to know that it’s done right and your loved ones are taken care of.
  9. If you have children under 21, it’s important that you list a guardian–maybe even more than one in case the first person is unable to perform these duties. Be sure to talk to whoever you appoint–this isn’t something you need to surprise someone with.
  10. Be sure to have 2 witnesses sign your will, notarize it, and if you did go through an attorney, one copy can stay with him/her and you can store a copy in your safe/safety deposit box.
  11. Keep the five wishes or living will more accessible–in a top drawer–with other emergency info such as a list of your medicaitons, DNR orders, and medical insurance info. Let your family members know about this now–so that your needs and wants are respected.

No one likes dealing with the thought of dying, but a little bit of effort can save a whole lotta hassle.

(BTW, this post is based on a Times Union article by Matt Soergel).

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    “I quit!” I said it more than once when I was caregiving my mom.

    And I meant it–the only problem was, I couldn’t figure out what to do with her if I didn’t care for her!

    I was an only child. Her sister was older than she was–and her children were taking care of her. I tried to find a care home that wouldn’t break the bank and offer decent care. I couldn’t find one–I was at the end of my rope. (I know more now about how to find care homes and financial possibilities than I did back then).

    I felt stuck. My mother was in the darkest trenches of Alzheimer’s. She was mean, didn’t know who I was. She’d try to hit me, kick me, fall, refuse to let me help her. It was rough and the truth was, there was no one but me to do the job.

     I told my husband “I quit.”

     He said, “You can’t.”

    Easy for him to be honorable. He got to go to work each morning and leave me in the house with…her!

    I “quit” more than once. At least saying it felt freeing, and for a few minutes I could imagine myself not caregiving.

    I so wanted to walk out that door, but I knew I couldn’t leave my mother to my husband and children. They didn’t deserve that. I dreaded each day. I resented my family for getting to walk out the front door to jobs and school. It wasn’t pretty. No one wanted to be with me or engage me in conversation–not that I blamed them.

    In some ways, my family kept me “honest.” They pitched in, rubbed my back, made dinner, took time to be with my mother so I could nap or stare into space. It was a time in our family that really tested us and showed me how much we needed and supported each other.

    Where do you go from”I quit” when you can’t quit? 

    There’s pretty much only three choices:

    1. You either get help and lots of help (I had help, but keeping help that really helped, well that’s another post).

    2. You find a care home–and as I said, you do have more options for free, low-cost, etc., but you need to ask for help and do your research–the care home can help guide you, but don’t just take their word. Check with elder-affairs and other state and community services to fully understand your options.

    3. They die. Sounds harsh, I know. But what happened in my situation is that soon after this incredibly dark place, my mom lost her ability to swallow. I considered a feeding tube but decided that at 92 with Parkinson’s, Alzheimer’s, and heart disease, that keeping her alive through a tube wasn’t something either of us wanted or needed. This occurred over six months or more, but I knew I had to see this through. It was a grueling time for all of us, but a necessary closure.

    My decision to not use a feeding tube was not easy by any means. I grappled with this, if this was right, ethical. We brought in hospice, which I was surprised actually supported my decision. I worried about what others would think. I struggled with what this would do to my mother–if it would hurt–would she know? Would she be confused?

    Saying “I quit” helped lift the little stopper off the pressure cooker. I had to say it several times–like a drowning man who’s more flailing than drowning–but then it became serious and I really was gulping water.

    Seeking solutions (even if they didn’t work out or only helped for a short time) felt like action.

    Having others (my family and friends) support me, reach out, and offer their arms to hold me convinced me I wasn’t alone.

    And yes, there is a time to find that care home, to admit you’re done for, to allow them to die–if that time has come. Good old Ephesians was right. There’s a season for everything. No wonder this beautiful prayer was offered so long ago:

    To everything there is a season,
    a time for every purpose under the sun.
    A time to be born and a time to die;
    a time to plant and a time to pluck up that which is planted;
    a time to kill and a time to heal …
    a time to weep and a time to laugh;
    a time to mourn and a time to dance …
    a time to embrace and a time to refrain from embracing;
    a time to lose and a time to seek;
    a time to rend and a time to sew;
    a time to keep silent and a time to speak;
    a time to love and a time to hate;
    a time for war and a time for peace.

    ecclesiastes 3:1-8

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    If someone asked me that point blank, I think I’d say, “Am I Afraid to Die–literally or in theory?”

    Most of us aren’t afraid of death per say, we’re afraid of dying. Will it hurt? What comes next? I don’t want my loved ones to hurt…those are the concerns that cause us to wince.

    I was my mother’s daughter/full-time caregiver, and my mother passed away in my home with me beside her. I got a ring-side seat for this event and I am profoundly grateful for this. We try a little too hard to neatly contain the messiness of life and birth in our modern world, and we don’t know up-close what the entering or exiting of life looks like. I want to know. I do better knowing.

    I was scared to death (word pun, here). I didn’t know if I could handle my mother’s passing. If you’re facing this–as a spouse, a daughter, a son, a dear friend–know that you can. It’s not scary. It’s holy. It’s quiet. It’s easy. It’s hard. I need to mention that it’s hard, but it’s a good hard. It feels like something you’re supposed to do.

    Are there some less-than-pleasant biological factors involved? Can be. That’s why hospice is a great support for the end of life. But do know that they’re your support system. Don’t hand this over to them because you think you can’t handle it. Let them show you how.

     I believe it’s vital–after caregiving–to finish the process. You will come out “cleaner” from the experience if you see it through.

    In theory, I know that death, (even mine) is inevitable. In theory, I know how a car works, but I sure couldn’t build an engine. Some things require trust that once you’re there, you’ll know what to do.

     I am a person of faith, but I don’t have the hard-fast beliefs I used to. I believe I’m eternal–in some form or another, and I’m less concerned about the location of my after-life. I figure it’s a great big universe, and whether I’m an atom or walking on streets of gold, I’ll be okay. I have a good feeling about it all, and I don’t have to comprehend the details because frankly, if my puny little mind can comprehend the magnificence of the afterlife, then it can’t be too impressive…and I’m looking forward to mind-blowing more than I can possibly comprehend–bring it because I know that eternity is going to be a-maze-ing. (a maze…)  

    It’s the jumping off point that has me a bit concerned. Like most folks, I’m not ready to die–today.

     If given the choice, I’d like to hang around a little longer–a few decades, at least. I don’t think growing older makes you suddenly want to stop living either. The only people I know who are wiling to check out are those who have been in excruciating pain–physically or mentally.

     A few people go out gracefully. Their bodies wear out, their loved ones have already crossed over–and they make their peace and let go of this world as if waving goodbye to a dear friend you know you’ll see again soon. Very few. I’d like to be in these ranks, eventually. I’d like to not claw onto this world and the people who have loved and cared for me–I’d like not become a ravenous animal who won’t move on, but I’m not making any promises:)

    It reminds me of the old American Indian saying when met with a battle that may end their life, when you know it’s coming, it’s best to take on the mentality, “It’s a good day to die.”  That’s what I’m aiming for when my time comes. I’d like to be the kind of person that recognizes it, steps up to the plate, and chooses to step off the ledge–rather than being pushed.

    I think it’s important to ask yourself the question, “Am I Afraid to Die?” Don’t try to force an answer. It’s about pondering the question. Being afraid to die has a lot to do with being afraid to live–and that’s what has my head spinning.

    ~Carol O’Dell

    Author, Mothering Mother

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    Medications lined up on the counter, canes, wheelchairs, hospital beds, portable potty chairs…at some point during the caregiving process your house stops looking like your home. It’s disconcerting in many levels: your loved one isn’t getting better, and it not only feels like you’re losing them, and on top of that, you’re losing a part of yourself as your house morphs into something unrecognizeable.

    On top of that, your schedule is just plain wacky. Maybe you’re dealing with sundowning (when your elder loses their sense of night and sleep and actually gets more agitated and awake), or maybe you have a parade of home health aides or hospice personnel traipsing in and out all hours of the day and night. You appreciate the help, but it also means you have to stay dressed and be “on,” even when you feel like falling apart.

    Then there are the endless doctor appointments, or maybe your loved one is in and out of the hospital or rehab. You barely get a decent routine established and bam, a month in the hospital and you have to start all over.

    I experienced all of the above and I admit, I wasn’t Miss Keep-a-Perfect-House to begin with.

    My mother was such a control and clean freak that it turned me off when I was a kid. Years later I figured out it was a personality difference: the structure she created made her feel safe–and it made me feel smothered. As an adult I had finally learned how to live in my own harmony–but then caregiving my mom with Alzheimer’s and Parkinson’s came into my life–along with raising three kids and a marriage–and trust me, order flew out the window.

    Yeah, I used to beat myself up all the time about the sink full of dishes or the laundry not put away–oh and let’s not forget the dog hairs that clung to bottom of the toilet base (I hate that place!), or the piles and piles and piles of paperwork on my desk….

    But I tapped into a different way of thinking that made me feel a whole lot better about myself.

    If you brought me into a horribly messy room and told me to clean it up, I’d feel overwhelmed, avoid doing it, believe it would take me weeks to make a dent, or simply rebel.

    But…if you brought me into that same horribly messy room and asked me if I could make it beautiful, my Geiger counter would go off the chart.

    I would think along the lines of color, style, symmetrical and asymetrical lines.

    I would think about what should go on the walls, and what should be put away. 

    I would immediately recognize art pieces or family moments in the room that could and should be highlighted.

    I would be excited and couldn’t wait to get started.

    So I used that principle to get excited about aspects of caregiving.

    After we called hospice, which of course was extremely hard and scary, and after I accepted that fact that my mother’s time on earth was limited, I began to look at her room and how I wanted it to “feel” during the last months of her life.

    First, I decluttered. My mother liked more “things” than I did–knick-knacks–everything from garage sale goodies to valuable antiques and a gazillion family pictures crammed into her tiny apartment we built onto our house for her. I began to get them out of the way. I knew that we were literally fitting about 4-5 new people into our lives each week: a nurse, a home health aid for baths, a chaplin, and family and friends who would come by to visit. We needed space, and I needed to think straight.

    Next, I put up a lace curtain over her bedroom window. She already had blinds, but I envisioned her lying peacefully under the morning sun and the lace curtain moving gently on a breeze. Poetic sounding and maybe even a bit sappy, but I needed this vision of beauty, especially at a time like this.

    I put up one of those easy stick flower borders in her bedroom and brought in my favorite lap blanket and a few books of art and poetry (Mother’s Bible was already there, and a picture of her mother she had grown attached to) my journal, and a small vase of wildflowers so that when I was sitting with her, I had a bit of my creature comforts nearby.

    Things were feeling better. I had created my own sense of order (the papers were still piled on my desk, I assure you), but I had focused on beauty, and for me, that brings joy and peace and was at a time when I desparately needed a little bit of both. 

    Did my mother notice? I’m not sure, but this was for me. This was so I could sit and hum a familiar song, swab her mouth with Vaseline and wipe her face and arms with a cool cloth. This was so I could do all the things I needed to do.

    My mother was pretty out of it those last few weeks (the end of Alzheimer’s had caused my mother to forget how to eat and eventually swallow). But I noticed that the more I made this a haven for me, I didn’t dread sitting next to her. I could sit with a cup of tea, my blanket, my journal, and read her a Psalm, look out the window with the lace curtain, and be present in this very important time in our lives.

    What motivates you? What helps you think clearly and move easily?

    Do your surroundings resemble a hospital ward or a home?

    What makes you feel safe?

     What’s your idea of order–or beauty? It may be very different from mine, but I hope you find yours.

    ~Carol O’Dell

    Author, Mothering Mother: A Daughters Humorous and Heartbreaking Memoir

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    If one emotion could sum up caregiving, it’s that you feel so alone much of the time.

    It’s ironic since you’re hardly ever alone–caregiving means you have a buddy–someone to care for all hours of the day and night. And it’s not that you don’t appreciate their company because one thing I really miss now that my mom is gone is that I did have someone to be with–to pal around with–wander through the store with.

    My alone-ness felt a lot like a bad case of the flu. I ached. I could barely tolerate anything or anyone. I was edgy, empty, at times ravenous, at times nauseous of my own life.

    I longed to be alone. I longed to not to have a myriad of tasks to perform. I’m contradicting myself, I know, but that’s what it’s like to care give–to feel utterly alone while you’re never alone.

    This is only one of the many confessions a caregiver–many we can barely admit.   

    As you continue down this path, your world tends to get smaller and smaller. You’re bottlenecked–caregiving stress is very real. Your days center around meds, worry, doctors, home health aids, the medical community…but it’s not a “balanced” lifestyle. The alone-ness comes in that you don’t feel fit for “human consumption.” You can’t seem to carry on a pleasant conversation. Chit-chat is beyond you. You might not realize it, but your inability to communicate is a symptom of stress, sleep deprivation and worry.

    Maybe you feel alone because your siblings or relatives aren’t helping.

    Maybe you feel alone because your neighbors are avoiding you because they’re afraid you’ll ask them to do something, or that’s your assumption of why they barely wave anymore.

    Maybe you feel alone because you’re angry, lost, and wondering how you got here.

    Maybe you feel alone because you know your loved one doesn’t have long and you’re paralyzed at the thought of them dying.

    Maybe you feel alone because you’re too tired to feel or do anything else.

    It’s not that there aren’t resources–online chatrooms for caregivers (the ones at AARP and Alz.org are great).

    It’s not that you can’t call up a friend (even though you suspect you complain too much and aren’t a very good friend yourself).

    It’s not that you can’t go to a support group or arrange for respite care (although that sounds like a whole lot of trouble). I can give you a very long list of resources that help to some degree, but know that the angst isn’t easily absolved.

    For me, a snippet of a poem, painting a wall (which might take a month to complete), going for a short walk and deadheading a few flowers were ways to assuage my loneliness. I needed something outside the caregiving experience. I needed to connected with other aspects of my life.

    Art, nature, song, poetry, a line of a Pslam, a wisp of a prayer, sip of hot tea was about all I could tolerate. But it did help. I needed new thoughts. I needed direction.

    I don’t know what will soothe you, but you know. Look in your past–in times of great pain or loss–and you will find your own secrets of how to get through this.

    I’m a big believer that most of the answers we seek lie within. You already know what comforts you, guides you, and heals you.

    ~Carol O’Dell

    Author, Mothering Mother:

    A Daughter’s Humorous and Heartbreaking Memoir, on Amazon

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    I have to admit that I didn’t attend a caregiver support group while I was caring for my mom.

    I started full time caregiving back in 1998 and honestly, I didn’t even know caregiving support groups existed, and by the time I did, Iwas feeling so overwhlmed that if I had the opportunity to dress and leave the house (and leave my mother), I had decided that it wasn’t going to be to go and talk about my mother! Yeah, I’m stubborn.

    It’s not that I didn’t need a support group. I’m sure my friends were sick of my griping and whining.

    But honestly, what little energy and thought I had were used to continue to parent my children. In addition to my mom’s meds, physical therapy, and every day needs, I also had to think about SAT prep, teaching my youngest how to drive, helping another study for a big test, making sure they attended a youth group–and my spare time was spent driving them or making sure they got to their activities. And that’s the way it should be–that’s what being a sandwich generation parent is all about.

    But now I know now that it would have benefited me greatly to attend a workshop, conference or support group–at least a couple of times a year.

    Caregiver Support Groups Help By:

    • Giving you a safe place to vent
    • To know you’re not alone
    • To find out about your community’s resources
    • To make short and long term plans
    • Helping you understand what part of the journey you’re on
    • To give you validation and permission to feel all that you’re feeling

    So yes, I wholeheartedly encourage you to do a bit of Internet browsing and find out what’s available for you–almost every city and county offers something–an Alzheimer’s Association meeting, an American Heart Association gathering, stroke group meeting or a hospice based workshop.

    I know you might not have fully accepted your role, your “name tag” as caregiver. That’s a big step. 

    That means you’re at the top of a really big hill–and we all know where it’s headed. But I promise you’ll feel more relief in attending than you think.

    Don’t Just Attend a Support Group–Also Consider:

    • Talking to someone while you’re there and even exchanging email addresses or phone numbers
    • Ask a question–chances are if you don’t know the answer, others don’t know it either–and would really appreciate your candor
    • Get info, lots of info–and follow up, make some calls or check out various groups on the web
    • Many home health organizations attend these workshops–you could find some great resources, so look around
    • Begin to take pride in your caregiver’s “badge of honor.” Get educated. Help others. Be okay that this is who you are and where you are–for now.

    One last thing-

    I hope you’ll step outside your comfort zone and sign up for yoga, take a computer course at the community college, get Rosetta Stone and learn a language.

    I know, you’re exhausted. Overwhelmed. Too numb to live your pinky finger.

    Don’t let caregiving shut your personal growth completely down. It doesn’t have to.

    Carve out an hour a week for a class. Carve out 15 minutes a day to learn to knit or practice your Spanish verbs.

    Learning and moving is absolutely vital to your body–and soul.

    It even makes you a better caregiver.

    Go on, type in caregiver support group, and the name of your city or area.

    Find out what’s available.

    Finding new friends and resources is a good a thing. 

    ~Carol D. O’Dell

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

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    I was at a friend’s house last week. She has cancer is awaiting a double mastectomy. Her family and friends have flocked to her side–like birds heading South and all landing at the same lake–cars lined her driveway all hours of the day and night. She is surrounded, and I’m glad for her. I know she has a network–she is respected, appreciated, and dearly loved.

    But that doesn’t mean someone won’t make an ass out of themselves.

    I don’t mean it in a “I would never say something that stupid” way because trust me,  I’ve been known to say a few blunders in my day/ But I watched and listened as someone said,

    “If this were going to happen to anyone, then God sure did pick a strong person because you have so much faith–it’s amazing.”

    I wanted to smack that person on the side of the head like they do in those V-8 commercials.

     

    I know what this person meant, but faith or lack of faith has little to do with the situation. You don’t get cancer because you’re strong enough to handle it. If that’s the case, then sign me up with the punies, wusses, and scaredy-cats while I duck all the terrible life bombs that get hurled at those “strong people.” Still, my heart went out to this well-meaning person. We’ve all said less than helpful/cheerful things at just the wrong time.

     

    So, I’ve compiled a “What Not to Say” List:

    • God knew you could handle it. (God ((and I don’t mean it, really)) was wrong)
    • You’re so strong. (If I’m weak does that mean I don’t have to go through this?)
    • Your baby/husband/child was so special that God took him (God gets blamed for a lot, apparently–no wonder we have issues with “Him.”
    • I could never do what you do. (I had no choice)
    • You’ll find love again. (Back off–I’m not ready to go there)
    • It’s better this way. (Is it?)
    • At least they’re out of pain. (But I’m not)
    • He/She had a good long life–it was time. (Who gets to be the judge of that?)
    • If there’s anything I can do for you, just call. (Figure out what needs doing and do it.

    So What Do You Say?

    • Sometimes nothing. Just a hello, maybe a gentle smile or hug–play it by ear and see if they’ve been bombarded all day.
    • If it’s appropriate, say, ‘I’m sorry that Bill died.” Don’t be afraid of the word, “died.” Or go with a simple, “I’m sorry for your loss.”
    • Let the bring up their loved one. Some people just can’t talk about it for awhile and others find it cathartic.
    • Send a card–tell them you’re thinking of them, love them, holding them in your thoughts–something about them. If you’re close and want to be more personal, then share a good memory–something in writing they’ll be able to keep.
    • Be sensitive. If there’s something you seeor they need, or find difficult doing, then volunteer to help them out–clean gutters, help them take items to the Goodwill, ride with them on errands–every one has something that’s hard for them to do alone.
    • Be there in the weeks and months to follow–grieving is a long process–and even though they have to go on with their lives, return to work and activities doesn’t mean they’re “over  it.”

    Finally, be patient. Your friend/loved one/co-worker who has experienced a death may act erratic at times. They may be testy, nervous, anxious one minute–only to be followed by teary, hot-headed or depressed the next. I heard one person describe grief as if they’re wearing their nerve endings on the inside-out. Don’t take their mood swings personal. Listen well and be their steady companion through this difficult journey.

     

    And if you screw up and say something dumb, just apologize. A quick, “Hey, that didn’t come out right” will be quickly forgiven. And forgive yourself. It’s more important to try and flub, than to avoid.

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