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Posts Tagged ‘end of life’

My mom had Parkinson’s, heart disease, and Alzheimer’s–and she lived with my family (husband, daughters and me), and I was her full-time caregiver. I remember when I realized my mom was dying., literally dying–and that she would pass away in our home. I wanted to give her a home passing, but I felt sucked into death with her. The atmosphere of our home was somber. I was sleep deprived, zombified, and barreling toward depression. As crazy as it sounds, I told my husband I wanted a puppy.

Yes, I know dogs are work. I know puppies are even ten times more work. Why would a caregiver want something else to take care of? Because I needed to surround myself with new life. I needed a roly poly furry baby body to hold. I needed puppy’s breath (which to me smells like coffee, an aroma I adore) and tiny wimpers. I needed to surround myself with life as we faced the end of my mother’s days.

It wasn’t that I had read or considered studies about stress and the healing powers of pet therapy. It was pure instinct.

I’m often asked for hints to help caregivers and I know it might sound lame, but I deeply believe that the answer, at least part of it, lies in nature. We’re surrounded by this lush world of variety, color, texture, sights, smells, and sounds. The earth is our food–for our bodies and our souls.

My greatest comfort during my most stressful caregiving times was to go outside, stand by the river behind our house, wander in and out of the trees, pick wildflowers (commonly known as weeds), and feel the ground beneath me and the wind brush past me. Nothing brought me back to a place of calm than to simply step outside, take a few minutes, and breathe.

My husband and I went for a bike ride just minutes after I said I needed a puppy, that all of us needed a puppy. We’d only be gone ten minutes–a jaunt around the neighborhood…and there was a sign near the front of our community. “Free puppies.”

Not kidding. There it was. I took it as a sign (ha!) and we turned into the driveway.  It was a wide, flat yard with a doghouse, a trailer for a boat and a few spread out trees. And there was my puppy. A six-week old Alaskan Malamute/German shepherd mix curled in a C under the boat trailer. She was fat, sweet, and I knew she was to be mine.

We came home from that ten minute bike ride with Kismet. That’s her name. It’s means fate.

Our daughter’s eyes lit up, and even my mom, lost in muddled memories so long ago, connected. We were smitten. Kismet made us all laugh, play, and  cuddle. It was exactly what we needed. New life. Hope. Proof that life goes on.

Yes, it  took energy and time to train her, and we all pitched in. And yes, puppies do get up in the middle of night–but hey, I was already up with my mom anyway. She had sundowning and many of her nights resembled a late night brawl in a lively Irish pub. My mom yelled, ate handfuls out fo the frig or pantry, tried to escape, wrecked her room–it was wild. At least I could calm her, get her in bed, and hold my pudgy puppy for a few minutes and take in that musky, earthy puppy breath that only lasts for a few months.

Maybe this sounds like too much work, and don’t think you have to commit to a pet in order to feel joy and connection. 

Simple ways to surround yourself with new life:

  • Get flowers at the grocery store each week. Start collecting African violets–get some feed solution,  and set yourself up a window of violets in pinks, lavenders, deep purples and blues. If one dies, toss it!
  • Get some stick-on bird feeders that attach to your windows. They’re so cool and you can get them at a local bird or pet store, hardware or even WalMart. You can get hummingbird feeders or songbird feeders. It’s amazing to stand in your kitchen washing dishes and see a hummingbird hover right in front of you.
  • Buy bird feeder and put up a bird bath in your garden. Who cares if the squirrels eat it, too. Squirrels are fun to watch as well. I had a little guy with a bent tail visit me outside my home office window for years–every morning at 10am. I rushed to get in there to see the little guy and I enjoyed their antics–he apparently had a thing for a girl squirrel who was the equivalent to the prom queen because every male squirrel fawned over her. It’s better than watching the soaps!
  • Get binoculars and sit on the porch with your care buddy and bird watch together.
  • Stop by your local animal shelter–or even the pet store. On your way home from errands, stop and pet some kitties and puppies at the local shelter. They need love and will be better pets for their adoptive family if they get touched and talked to every day. You don’t have to “own” a pet to enjoy them.
  • Go to the zoo, local butterfly garden, or nature preserve. Caregiving can include field trips! Even if your loved one can’t walk far, many places have wheelchairs or can drive you in a golf cart. And who says you need to go through the whole place? Pick one animal you love, let your care buddy pick one animal they love, and only go there. Even thirty minutes is worth it–and with senior discounts, it’s a reasonable price and will change your whole day.

Kismet is now 7 years old–and what I had no way of knowing is that she would give us another gift. The last few months of my mom’s life was excruciating and poignant. Alzheimer’s took her ability to eat, to chew, to swallow, and her death was slow but I’m grateful to have this experience. On the year anniversary of my mom’s passing, Rupert, Kismet’s son was born.

Life trumps death.

He is the most adorable dog–sweet, funny, goofy and he came right on time. Just when we all needed another infusion of life.

I hope you find life–in the midst of caregiving–in the midst of sorrow and stress. Go with your gut and find something that quickens your heart. Life. It’s all around you.

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Our lives change and we can’t get what we had back. As we age, we have so many challenges to face.

We have to redefine ourselves, figure out who we are. It seems at times that life speeds up in all the wrong ways. We retire. We have to figure out who we are outside our career. We find a lump. We give up driving. We lose a foot to diabetes. Our son dies and we’re left here to live on, and we don’t know why. Our spouse gets Alzheimer’s.

Some shifts are permanent and long after the initial grief leaves, we struggle to figure out who we are now in light of all that’s happened.

 Who have we become? What does life hold for us? How do we reconcile our lives to what’s happened?

There are no easy answers. It’s easy to give into depression, but there’s another choice. Somehow we have to allow these changes, sorrows, and losses to become a part of us. Not all of us, but we have to fold these changes into who we are.

How?

I know a mother who woke up the morning of 9/11 and turned on the television just in time to see the second airplane fly into the World Trade Center. She turned off the television. She knew her son was dead. She couldn’t explain how, but she knew. She spent the next week in quiet. She journaled, prayed, drew pictures, sang their songs and held him in her thoughts.

She refused to get sucked into the news, into the images of mayhem and carnage. Instead, she turned their story into a children’s book—it was a story they made up together when he was a child. She used her sorrow into something sweet and good for others. Yes, she faced many dark nights, times when she thought her soul would rip apart. It doesn’t make the pain go away, but it gave her something to do with what happened to her, to them.

I don’t know what you’re facing, but I hope you can something with your experience, something that will comfort you and help others.

Carol O’Dell

Author, Mothering Mother

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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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    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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