The Love That Surrounds a Death: Accepting the Healing Touch

I opened my front door Thanksgiving morning and called “Here kitty, kitty, kitty.”

My 14-year-old cat, FatBoy had been missing 18 hours. I was up late in the night looking for him. He never went far, hanging around our shady front porch, but most eating (thus his name) and sleeping in various windows, beds, and closet corners throughout the house. No answer. No meow. I was in full worry mode. I’m no stranger to death. I know that losing  a pet isn’t like losing a parent or spouse, or child but nothing in me wanted to go through this again. Not today. Not Thanksgiving.

My husband and I took our bikes and began to ride around the neighborhood calling him.

And then I saw him.

My husband threw down his bike and got to FatBoy before I did. His hands went to his heart. He ran half way to me, turned and back to FatBoy, then back to me–not knowing what to do.

And then he held his arms open and I folded into his chest and cried.

We’ve been through so much together. He held me when my adoptive Daddy died, the big teddy-bear hero who gave me a home and made the world right again. I held him when his brother-in-law died in a head-on car crash. Bill swerved the car and spared the life of his wife and daughter. My husband identified the body. I held him at four in the morning when he returned from the morgue and collapsed in my arms. He held me when my mother died after years of Parkinson’s and Alzheimer’s, when exhaustion gave way to release gave way to void. He sat beside me on a sailboat as we helped to scatter a dear friend’s ashes into the sea, feeling our own mortality. We’ve stood side-by-side as we witnessed the death of friends, family, and yes, our beloved pets and remembered their lives in that bitter-sweet time of letting go. I can barely grasp what it would be like to lose him. I can’t even let myself glimpse into that sorrow.

Who would hold me?  Who would I hold?

I’ve learned a thing or two about death. I’ve learned to not stop the pain, the tears. I’ve learned to accept the love, the support.

I stayed with FatBoy while Phillip went back and got a blanket. He was in a garden behind a small white picket fence. I call this particular neighbor’s house the Thomas Kincaid house. His paintings are warm cottages with trees and shade, and dappled sunlight. It was quiet, a little cool. I could sit with him. Be with him. I wasn’t afraid or nervous. It was just him and me.

My husband dug a hole in the backyard and we decided to bury FatBoy under my Buddha statue. I bought the laughing buddha for my birthday last May–did I somehow know? I laid my sweet, chubby, always there for me kitty into the earth and sprinkled the first handful of cool, moist dirt on top. I wanted to do this.I was fully alert and present. It wasn’t like Daddy’s funeral. I was 23, so young, so scared. I turned away when they lowered him into the ground. Today, I don’t need to turn away.

It felt right–for him to die in a garden and be buried in a garden. In the spring he’ll be surrounded by cannas and irises and calla lillies. There’s a windchime in a Live Oak nearby.

Our youngest daughter joined us. She hugged me–full body. We held  on to each other, neither of us in a hurry to let go. Our middle daughter arrived for the day’s festivities. She’s the director of a massage therapy school and could charge for her hugs, they’re so good.  I felt my muscles give way, and then her husband–a former wrestler with a wide chest and strong biceps curl around the two of us. My friend, Laura arrived and ran to me. She has four cats, and we cried and cried.

I’m tired of holding it all in. Tired of trying to be strong. Tired of keeping it all together. Each person, their arms, shoulders, necks and kisses comforted me. I allowed each of them to minister to me, feed me, be my strength.

We all pulled the meal together, sat down at the table and took hands. And I realized that it was good day for a death–I was surrounded by people I loved and who loved me.

The love that surrounds a death is healing. It’s comes in time. You’re ready when you’re ready, when life has brought you here. It will come.

The Invisible Caregiver: When Your Spouse Doesn’t Admit He (or She) Needs Caregiving

Who is an invisible caregiver?

Millions of spouses, adult children and friends who are caring for someone they love–but having to “do it on the sly.” It’s a tough transition, to admit you need care. After decades of being the strong one, the provider, the professional, the hub of the family, admitting that you need help in and out of the bed, in and out of the car, or down the stairs because of a chronic illness, disease, or after surgery can feel like a blow to the ego.  And it’s not who they are. Call is pride, but there’s a time in a person’s life when they aren’t ready to admit they need care. Their worth goes far beyond their need for help.

I met a gal last week who is caring for her husband, but it’s not a label she gives to herself. He has MS and is in a wheelchair. He’s on disability and yet he strives to see himself as he always was–a competent businessman, father, friend and spouse. He is–all those things–but he needs a little help now and then.

They married last year and their devotion and honeymoon love is obvious. They look at each other with such tenderness. She walked into this relationship eyes open. His disability isn’t what she fell in love with–it’s his charm, his wit, and his generous spirit. But his disability is something they have to work around.

She helps him dress–on difficult days. She makes sure his meds are delivered on time and she helps him sort them and reminds him occasionally (wives tend to do that–some people call it nagging but it’s all in the interpretation). She washes his hair. She works her schedule around his so she can accompany him to doctor visits so she can help manage his care. And since he’s prone to infection, she takes extra care to keep their environment germ-free–and keeps masks available for when they’re out in public during flu season.

The other night, he had a fever and decided to sleep downstairs on the couch. He just didn’t have the strength to head upstairs, change clothes and do his normal bedtime routine. She slept in the recliner next to him and checked on him several times that night–to make sure his fever didn’t spike.

Yes, technically she’s a caregiver. But her husband is a young 50 years old,  and his disease takes such a toll on his life and health that she doesn’t want to see him as needing care. He wants to be seen first as a man. That’s how she chooses to see him as well.

There are times when naming something brings a sense of relief–so that’s what it is. The definition helps define us. And then there are times, as in this gal’s case when it changes the relationship. She’d rather be an “invisible caregiver.” She’d rather consider herself his wife, his companion, his confidant.

Caring for a spouse isn’t a role. It comes with “I do.” All the invisible caregivers out there–spouses, children or friends do it out of love and loyalty. They choose to camouflage the care they give in order to keep the emphasis on the relationship–to give their loved one the dignity and respect they deserve.

Do More People Die Around the Holidays?

Do more people die around the holidays? Yes, sadly they do–at least hospice numbers reflect a rise in deaths during the holiday season.

Some factors are obvious–flu, depression, car accidents to name a few. It’s hard on families–to have a loved one on the brink of death during what’s supposed to be a joyous time of year. Caregivers are torn between exhaustion and sometimes feel a tinge of relief after a long bout with cancer or heart disease. It’s hard to face the holidays while you’re grieving–and grieving starts long before your loved one dies.

A dear friend of mine worries if her dad will make it through this Christmas. Everything seems bitter-sweet. Her mom died near the holidays as well, and she misses her each year when she’s decorating the tree–something they used to do together. “I try to enjoy the season, but it’s hard. Hospice is coming three times a week–and we all know it won’t be long now.”

Perhaps the hardest thing to face is a new death. Recently, I met a woman at a care conference who just lost her son to AIDS. It’s only been two weeks, and she looked completely depleted–physically and emotionally. She says she doesn’t want a tree–she couldn’t stand to look at one. I told her I understood. It’s okay to “skip Christmas.”

Grief may get notched up a bit during the holidays. It may be that someone you love died during this time of year (even long ago) and your body has a “muscle memory” of that time in your life. You may not have verbalized it, but then it hits you-and it all makes sense.

Maybe it’s that you’re supposed to be happy that makes it so impossible to muster any joy or sentiment. Nobody wants to be told they have to decorate cookies or deck the halls. That’s not a should. Trust that if it’s a really rough time in your life that it won’t always be. It’s just for now. Be where you are. The only way I know through grief is to take one moment at a time. Even breathing or thinking can be so difficult at times.

Do what feels good. If you like driving around looking at lights, or going to see a performance of the Nutcracker, or sitting in front of a fire cracking nuts–do only what brings you a sense of peace. That’s the essence of this season. Don’t get caught up in the busy-ness, just do what’s easy.

“Treat yourself like you would your best friend,” I said to a friend who’s having a tough time. She’s one of the kindest, most giving, patient people I know. Too bad we don’t always extend that generosity to ourselves. I asked her what her best friend would tell her to do–she said, “She’d make me hot tea and tell me I can go put on my jammies.” Good advice–we should listen to ourselves once in a while.

The First Written Advice in History: Take Care of Yourselves, a Caregiver’s Creed

Caregivers are often told to take care of themselves, and sometimes this advice is a little annoying.

Exactly how am I supposed to take care of me? Not give my mom her pills in the morning? Go to the gym instead?  Not take her to physical therapy? Not help my kids with their homework or fix dinner? Just soak in the bathtub all day? Right…

Yes, the stress builds and you can’t sleep, you’ve gained 40 pounds and you’re pretty sure you’re depressed but you don’t care to go to the trouble it would take to find out. Self care sounds like a fairy tale most days, but don’t think that the self-help movement is some new-age 70s feel good way of thinking. It’s not. In fact, it’s as old as Socrates…

One of my favorite books is Eye Witness to History, edited by John Carey. It’s first hand accounts recorded throughout history, and as a memoirist and writer, I love having a front row seat to the most stunning and scary historical moments man has ever witnessed.

The first account is written by Plato and recounts the death of Socrates. The year was 399 B.C., and for those of you (us) who might be a bit fuzzy about Greek history, Socrates was a philosopher and teacher, (and he’s still widely debated today–both as an individual and for his teachings). He got in a bit of trouble with the Atenian government and was considered a “gadfly”  (a fly who stings the horse into action). He wound up in prison and was proved guilty of corrupting the minds of the youth of Athens (political minds, that is) and was  ordered to drink a deadly mix of hemlock poison, which killed him.

On the last day of Socrates life, his friends, including Plato came to visit him and asked,  “Do you wish to leave any directions with us about your children, or anything else. What can we do to serve you?” 

Socrates replied: “Nothing new. If you take care of yourselves , you will serve me and mine and yourselves.” 

So this idea of caring for yourself first is the best way to care for another isn’t new. It just makes sense and that’s why it’s been around for so long. When we “sacrifice” ourselves for too long, we lose ourselves, we deplete who we are. Sometimes it’s needed–giving all you have–but it isn’t a sustainable long-term model.

During the last couple of years of my mom’s life (she had Parkinson’s, heart disease and Alzheimer’s), I can tell you, there wasn’t a whole lot of self-care going on. I had to pull it out–long hours, lifting my mom, hospital stay after hospital stay. I rested when I could–napped in the middle of the day–or any other time for that matter, took long showers. when my family members could take over “mom duty.”

I simplified my life–letting go of work, friends, saying goodbye to many activities–but I held onto a few lifelines. I journaled every day. Not a lot, but when the tears or screams built inside, I’d anchor them onto a page. I slipped  outside to pray and think, allowing nature to nurture me. I returned to take a college class one night a week–up until the last six months of my mom’s life. I got a new puppy to bring us all joy and laughter and remind us that life does indeed go on. Other aspects of my life were put on hold. That’s just part of it–for a season.

Self-care isn’t always a bubble bath and candles. It isn’t impractical nor is it selfish. The only way for a caregiver to do it is to incorporate small amounts of self-care throughout the day. Read a line or two of a poem. Buy your favorite coffee and refuse to get up off that couch and take care of anyone until you drink that first cup. Put a lock on your bedroom door and use it. Take short five-minute walks in your yard. That may be all the self-care you get to, but those few snatched moments here and there add up.  You’ll find a sense of calm comes over you when you’ve honored your own soul.

Take care of you and yours and you will serve me well. Good advice. No wonder Socrates is still remembered today.

Caregiver Stress Getting To You? Try My 3 Day Cure

I call it my 3 day cure. When I was caregiving my mom who had Alzheimer’s and Parkinson’s–and I was a sandwich generation mom–which for me meant having 2 teenagers and one pre-teen (all girls to boot), stress could sometimes mount to a hair-pulling, screaming and crying at the same time fiasco. I wanted to walk out and slam the front door–and become somebody, anybody else. But that’s just it–you can’t quit–not and be the mom, daughter, human you know yourself to be. But there is something you can do….

I stumbled on this cure out of sheer desperation. It’s not easy, not in our society, and you might not believe that it works but I dare you to try it.

Here’s the cure: Stay home for 3 days. I mean home. I know better than to suggest you get 3 days of respite care. While that’s ideal, it just isn’t always doable. This is. Don’t run to the store. Don’t run to the pharmacy. Don’t take your kids to ballet or your mom to the dentist Reschedule. Shut down.

But, but, but…I hear you say.

Let me assure you, the world will not come to a screeching halt. You will not starve and your children–and mom–will get over hating you. If things are bad enough, and you’re stressed enough, you might be willing to give this a try.

The first day–stay in your p.j.’s all day. Declare it pajama day. My kids loved it. I forbid them to get dressed (school, yes, they have to go to school, but hopefully you either don’t have to drive or you can arrange a substitute). We all hunkered on the couch, watched movies, flipped through magazines and books. Make a pot of veggie soup. Eat what you have in the pantry–(even junk food) I doubt you’ll starve and who cares if you don’t hit all the food groups. Don’t answer emails or hang on the phone. Today you need to disengage. stare out your window and watch the birds and squirrels. Take a morning nap and an afternoon nap. You’ll feel odd, guilty, bored, zombified, and have that nagging feeling that you’re wasting your time. That’s the point.

The second day, ask yourself what you want to do. Remember, it needs to be in or around the house. Do you want to clean? Get out a craft project? Call some friends? Don’t try to spring clean your house, but do a bit of putzing, especially if something is really bugging you. Put on some music and take a walk in your own yard. Visit your plants and trees. Dead-head some flowers, pull a few weeds (not a lot). Today, avoid the junk food and eat some more of that veggie soup you made. Pour yourself a small glass of wine. Drink water. Eat and apple. The point of the second day is to putz and eat simple, but good.

On the third day, take care of your body. Bathe well. Shave your legs, color your hair, pluck your eyebrows, and trim your cuticles. Do your mom’s hair, too. Be girls together. Do your toenails and then hers. Go through your jewelery box, go in your closet and pull out ten old items to donate. Guys need grooming too. Trim those nose hairs, ditch those ratty socks, straighten up your tool room. Sit outside for 30 minutes, in the sun (or partial sun if it’s summer). Breathe deep and feel yourself recalibrating.

Feel these last three days. Feel your own rhythms. Weep is you need the release. Sleep if that’s what you’re craving. Read a few lines of your favorite poem or lyrics from your favorite song. Eat all the veggies and fruits you have in your house. Put on your headphones and dance to some tunes. Allow joy to flow back into you. The point of this day of deep self-care in whatever form you need it.  

After three days of staying home, keeping it simple and giving your body and mind a little time to reboot, you’ll feel remarkably okay with your life. Nothing is fixed, and maybe cure is too strong of a word, but you will feel different. Yes, it all cranks up again, but you have a quiet center now. You realize it’s possible and permissable to check out of the rat race for a few days. You’ll come back to your life, to caregiving, to loving those around you with a new resolve that’s gentle and honest.

You’re also teaching your parent and your children how to care for themselves. We spend so much time being jacked up on caffeine, medicated for physical and emotional illnesses, and then we pop yet another pill in order to sleep at night.

The truth is, our bodies can do all this naturally–if we give it a chance. We don’t need to go to work and school when we’re fighting the flu or so burned out we cry for no reason and bite someone’s head off when what we really need is some down time.

I naturally do this about 3 times a year. I can feel it building, and I know when I need it. I also give myself a media fast about 4 times a year–no tv, phones or computer for 48 hours. It takes a bit of discipline, and honestly I feel so lost in the beginning, and then I remember to sing, to walk, to draw, and to sleep, and to be.

No, you can’t just stop caregiving. You can’t stop being a parent, and you can’t go too long without having to run a gazillion errands and all that it takes to keep your crazy busy life going. But you can put up some healthy boundaries and give yourself the gift of time–and home.

 

A Multigenerational Household Isn’t Easy But It’s Worth It

Thanksgiving is the time of year we gather those we love under one roof. Pass the stuffing, hold the sarcastic remarks. If you’ve ever had your mother, your teenagers, and your toddlers all at one table, you know it can get dicey. No iPods at the table, yes you have to eat two bites of broccoli, and thank you, mother–I have gained a few pounds lately–glad you noticed and thought it worth commenting on!  Multigenerational households are petri dishes for family issues. The best way to combat the exhaustion and stress is with a splash of humor.

Your mother might not ”get” the challenges of raising a teenager in today’s world of texting and Youtube. She might have a comment or two about your toddler pitching a fit at Target and even state emphatically that you and your siblings never acted out in public (although you distinctly remember a few incidents). You can either laugh it off and not let it get to you, or…take it personal. It’s best to act like a duck and let the water roll off your feathers.

Change the subject or stand your ground, whichever the situation calls for. Remind yourself that you’re a “good enough” parent. You know how to prioritize and you give your heart and time to those you love. That’s good enough.

The only person who can give you that inner resolve to choose to not let your kids or your mom get to you–is you. For me, it took some alone time first thing in the morning and then a few times during the day. I’d sit in the car and give myself a pep talk. I’d walk back to my room to get something, look at myself in the mirror and give myself a smile. When one of those arrows struck me good and hard, I’d go cry, yell, or punch my pillow a couple of times. What was worse was when I didn’t take the high road and I was the one having to go and apologize. It comes with having too much to do and letting the pressure get to you.

Being mom to two generations–one on each side–is exhausting, frustrating, and at times you question yourself. It’s also rewarding. There’s something pretty cool about being the axis at the center of the wheel. Even though I got my fair share of scowls since I was caregiving and raising kids, (my mother had Alzheimer’s) at the same time. It felt like I was the bad guy all the time. I remember one day when I was arguing with my mom (who also had Parkinson’s) that she couldn’t drive in busy traffic, and then turning right around and giving my 15 year-old a driving lesson. We had plenty of tiffs, laughs and hugs, and that’s family life.  

So if you’re sitting down at Thanksgiving tomorrow, say a out loud thanks for being a multi-gen house. Grab hands, say a blessing, and pass the rolls. Your life may be really full and crazy right now, but know you, that really is a good thing.  

 

 

When Facing the End of Life, Surround Yourself with New 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.

Is Caregiving Not Turning Out Like You Expected?

I had rather sentimental and romantic notions of what it would be like–caregiving my mother.

I thought it would give us time–to mend misunderstandings, get to know each other as women, and while I knew it wouldn’t be perfect, I saw us more or less in idyllic terms. I’m not sure what caused such delusions–our relationship had always had its tensions (putting it mildly). I remember thinking about one month into moving my mother in with my family that caregiving wasn’t turning out like I expected.

As I wrote in Mothering Mother,

          In one short month, I have experienced one very long month. I’ve learned to stop romanticizing my    adult-daughter role as my mother ages. I would say “dies,” but dying isn’t the issue. It’s the conflicts and complications woven into the very fabric of our relationship that twist and warp with time.

         I used to imagine that Mother and I would sit by the river and drink iced tea, snap pole beans and talk. Mother doesn’t even care that there’s a river behind our house. A fairy tale, I know. Maybe I needed to create this scene in my mind in order to talk myself into doing this–care-give my mother in my home–as a part of all I am.

         We’re having to figure out how to stand next to one another in the kitchen, how to maneuver past each other in the hall, not just physically but even in our thoughts. No one fits every groove of our psyche, habits, or beliefs, and those knots and bumps rub us raw before we develop calluses.

         As hard as this is, I’m not in a hurry to get to the dying part. I want to face each day and glean whatever sweetness there may be, to truly be here, open my eyes wide and learn to stand next to her, neither one of us shoved to the side, each with a decent amount of space.

Maybe that catalyst, to believe we’d have time to “fix” us, was needed. I soon began to realize that “we,” our mother-daughter relationship didn’t need fixing. It needed accepting.

Byron Katie, author and motivational speaker has a great book, “Loving What Is.” That was my lesson. To see us, two women who could really push each other’s buttons, each of us knew all the weak spots to exploit, to know that what I hoped for was simple–that we could come together and stand in a kitchen–side-by-side.

For a time, it was getting along that was the problem. My mother criticized my parenting, my household skills, how I dressed, that I couldn’t come to her the second she called my name…and then there was a shift.

We graduated from having Parkinson’s and heart disease, to having PD (as my mom called Parkinson’s), heart disease AND Alzheimer’s. And then all of our fusses and rants seemed irrelevant. She didn’t know who I was, why she was in this house, and what had I done with her mother?

This really wasn’t what I expected. More to let go of. I remember that I asked my family not to celebrate 40th birthday. My mother didn’t know who I was, and I couldn’t deal with that, not that day. Another shift. I decided that it was okay–that she not know me–that I could remember “us” for the both of us. I would be her memory keeper. Once I made peace with that, I had one more big shift–dying.

Death is different than dying. Dying takes some time–which means it gives you time to think, to feel the changes. Difficult but cathartic–and necessary.

I don’t know where you are on your caregiving journey–fighting all the time, getting used to one another all over again,or maybe you’re facing Alzheimer’s and all the losses that come tumbling at you. Or maybe it’s time to call hospice. Another shift.

If Caregiving Isn’t Turning Out Like You Expected:

• Grieve what’s not. What was. What will never be. Some things can’t be changed. We can’t go back. We can’t sprinkle magic dust and make all the hurts of the past disappear. But there were  moments that slipped past–of genuine kindness, forgivenss, acceptance–but you have to look for them.
• Start today-with what you’ve got in your hands. The words that inspire me the most to remember that the test of my character is what I do with what I’m given. One of my favorite I’ve committed to memory is Rudyard Kipling’s “If.” My favorite lines are:

“Or watch the things you gave your life to broken,
And stoop and build ‘em up with wornout tools… 

Each time you have that feeling, it’s not what I expected, know that it’s time to accept what is, to let go of what was.

What I didn’t expect was that with each shift, I found new insights. I was able to met the call–love, give, for-give.

No, caregiving what wasn’t what I expected, and although I never thought I’d say it, I’m grateful for the un-pected gifts caregiving brought into our lives.  

 

Are You a Genius at Caregiving? You May Be and Not Know It

“You can become a genius at anything–if you’re willing to make all the mistakes necessary to find the right answer.” Those are the words of Dr. Michio Kaku, MIT physicist. Boy, does that sound like caregiving or what! I made lots of blunders while caring for my mom (she had Parkinson’s, heart disease and Alzheimer’s). It was a pretty steep learning curve. I was a sandwich generation mom with more balls to juggle than a circus clown. Mistakes were my middle name.

Being a genius isn’t about being gifted. It’s about perseverance.

I was watching a special on the Science Channel and was amazed at how long it took for Einstein to prove his theory of general relativity. In his early twenties, he had an epiphany while riding on a train.

He noticed the telegram poles whizzing by and he questioned, if he were to throw a ball down, it would appear to him to go straight down–and straight back up to him. But if someone were observing this while standing on the platform, they would see that the ball was moving forward–and down–and forward and up. He then took this concept and applied it to space and time.

From this initial thought, Einstein became a genius at physics. Not because math came easy to him (he realized later that his initial math was flawed) , but moreso because he stuck with it–even when he felt defeated and confused. 

It took more than a decade for those initial thoughts to evolve and finally proven.

At times, he felt like a failure, but he kept on–he had to. He was after something bigger than himself.  

As much as you feel like you’re bungling your way through your caregiving journey, you’re learning what works and what doesn’t–and I bet you could tell me a few things you’ve begun to figure out. Most adults don’t like to screw up. They have the wrong kind of pride. You have to be willing to take risks, ask questions, and live with your failures if you’re ever going to have a break through. Caregiving will test you–physically, emotionally, and spiritually.

Genius is believing that what you’re doing is important and worth the dark nights of the soul necessary.

What have you learned doesn’t work? Maybe a cane doesn’t work for your mom, your dad, or your spouse–while it may work for someone else, it doesn’t fly in your neck of the woods and no physical therapist is going to convince you.

What does work? Maybe you’ve found a solution–one that only trial and error would have uncovered. Maybe you can get your dad who has Alzheimer’s to calm down by humming the tune he danced to at his wedding–and it works every time.  That’s genius. Only the two of you will ever know this little secret, but it saves you much anxiety.

You’ve earned your stripes. You’re a good caregiver. Perfect, no. Some things are still in the development stage, but it’s time to pat yourself on the back and realize that what you’re doing–you’re pretty darn good at–so puff out your chest a bit and take a bow.

Caregiving is tough, but it’s not impossible. The little steps forward are hard-earned and worth noting.

Does Your Elder Parent Wander? Caregiving Concerns Explored

Just today, I was driving home when I saw an elder-woman walking on the side of a rather busy road. Cars go at least 40 and sometimes 60 mph. on this road. She had no business walking there alone. My husband and I turned around and I got out to greet her.

“Hello, I’m Carol and I live nearby–are you lost?” I asked, trying not to appear threatening.

“Oh no, I’m not lost. I’m walking to meet my daughter.”  Her sharp blue eyes smiled back at me and I thought of my mom and suddenly missed her.

“Where’s your daughter?” I asked. (We live several miles from the nearest shopping district)

“Out shopping. I was hoping I’d see her drive by.”

I asked her where she lived and she said she was visiting from up north but that her daughter lived “back there, behind that gate.” (She must have slipped out of the neighborhood when a car drive through the gate).

I offered to take her home. She got in our car (scary, huh?) We carried on a pleasant conversation. She pointed to her daughter’s house, told me what state and city she lived in up north, and other clear-headed facts.

She was mentally sharp, but she wasn’t making good decisions–her reasoning skills weren’t quite right.

She couldn’t understand that she was at least 2 miles from her daughter’s neighborhood, walking alongside a busy road, and that she really shouldn’t be trying to find her daughter this way–nor is it wise to get in the car with strangers, even though I’m very glad she did, in this particular case.  

I didn’t think “oh bad daughter!” Not at all. I had a mom who insisted she was going to catch a taxi and go to her home. I had no idea how she could even remember the word, taxi, or what it meant but she did.  It took me and my husband and children to keep an eye on her–she was determined to escape!

I took her home. Her daughter drove up within minutes. She had been out looking for her. I left concerned. It’s so so hard to watch someone all the time and never get a break. Her mom was such a vibrant woman, it would be a challenge to keep her from not wanting to strike out on her own–not realizing the dangers she was exposing herself to.

There comes a time when our elders are still smart, together people–great conversationalists and even pretty efficient in their every day lives–but there comes a time when they might not be making the safest decisions, and that might begin to present itself when they’re out of their routine, or when they’re with someone else who isn’t filling in the gaps for them. They can even keep their act together around their kids–because they don’t want to have to move out of their home.

Is this the beginnings of demantia or Alzheimer’s–or is this simply a natural decline of our mental faculties?

That answer is different for each person, but as a caregiver, a daughter, a son, or other family member, we must be diligent in our care for our elders. They can “fool” us, not meaning to. They’re so smart and funny and together–and we need them to be so our world can continue “as is” –and it’s so easy to overlook subtle warnings signs and the beginnings of those unsaid concerns, and that’s when something can happen.

Cognitive and reasoning skills change over time–for all of us.

Yes, it’s wise to get an ID bracelet, to show their names and contact info into their clothing and write it with a sharpie on their shoe or hat, but nothing takes the place of being aware of where your elders are just as mom has to know where her children are.

In Florida, we have the Silver Alert -a system that announces when an elder is lost or wandering and treats it much like a missing child and the Amber Alert system that alerts the authorities and posting it on the news and highways. This program has saved many lifes.

It’s our awareness that keeps our loved ones safe–and sometimes even that’s not enough.