Words To Ease Guilt

I haven’t written in a while.  Caregiving still takes up a good bit of my time- actually my world still evolves around it.  But I think I am just so tired of it all, that I don’t have the energy to write about it.  It just gets old.

I have been thinking about guilt. I always feel guilty, it is one of my greatest talents.  ( “Ha”, she said, sarcastically.)  But lately, I have been trying hard to make some sense of it, to figure out a way to help other caregivers manage it.  Recently, I read two  articles on caregving.  In one, the author called caregiving  ” a crucible”.  Now that certainly evokes positive images – NOT.  I looked up the definition and one of them is ” a place or occasion of severe test or trial.” And of course, it was a play written by Arthur Miller ( once married to Marilyn Monroe for all you trivia fans ) about the Salem Witch trials.   Then today, on Facebook, I read an article about the top ten emotions to be mindful of if you are a caregiver. Guess what was number one? Yep, that pesky guilt.

It seems to me,  the biggest reason  caregiving can be called a crucible is the emotional burden. Yes, caregiving can be physically exhausting, and financially burdensome, but the emotional burden is the one that is most difficult to manage. One can find ways to get some physical rest.  You can sell something to make money, get a reverse mortgage, etc. to deal with some of the financial burden. ( Not implying it is easy, just saying there are ways…)  But it is difficult to come up with a plan to ease our emotions, especially guilt.  Guilt is the one that seems to really hang on with a vengence.  I hear it from members of support groups, and other caregivers I encounter as I speak around the country. It seems to be a universal commonality.

As a reader and a writer, I know that words have power.  That’s why we can become so upset about what we read on Facebook. Those fools who  post those inane political statements can really get us riled!   But seriously, we know how words can hurt.  And occasionally they help.  When someone tells us ” Good job!” it sticks with us for a while and buoys our mood and spirit. And when the person with dementia for whom we care says ” Who are you?” or ” I hate you!” we know the power, the pain in the gut and the soul those words can render.

So I have been searching for some words that might help us with guilt.  I have found some words that we can memorize, or tape on the bathroom mirror or read over every night before you go to bed.  Just some words to try to put things in perspective for those of you carrying the enormous emotional load of guilt.  I hope you find them helpful. Because I know you are doing the best you can.

“It is not the strongest of the species

that survives, nor the most intelligent,

but the one most responsive to change.”

Charles  Darwin

 

“Guilt is a weight that will crush you whether

 you deserve it or not. “

Maureen Johnson, Author

 

“Guilt is a useless thing.  It’s never enough to

 make you change direction, only enough to

make you useless.”          

Daniel Nayeri, Author

 

“Worry does not empty tomorrow of its sorrow, it empties today of its strength.”                                                                  Corrie Ten Boom, Author, Nazi Prison Camp Survivor

 

“You can do anything…but not everything.”

David Allen,  Productivity Consultant

 

“Caregivers are not superheroes. Superheroes don’t get weary beyond their breaking point. Superheroes don’t hurt, cry, shake and struggle to hold it all together. Superheroes don’t cry themselves to sleep at night with a mixture of worry and exhaustion.”

Jeff Davidson, author

 

“Sacrifice – it’s difficult to handle any level of sacrifice if you don’t

receive acknowledgement of what you are doing, compassion for your

plight  and endorsements of your reason for doing what you are doing.

The platonic ideal that a family caregiver should be patient, generous

and strong. Sometimes we get this from images we see of others…

like Nancy Reagan caring for the President…

or from  past actions of others – “ my mother took care of her mother

without ever complaining, so now I must do the same.”

Or religious convictions, “God has placed this challenge before me

to test me or teach me.”

Barry Jacobs in The Emotional Survival Guide for Caregivers.

 

” You are not perfect.  You are merely the person trying to provide comfort, care, and love to someone who is succumbing to an illness or a condition over which you have little or no control.  What you can control is how you take care of you.”

                                             Jane Marks, Dementia Specialist, Caregiver, and Caregiver Advisor

 

Hope your burden is eased a bit.

As always, with love,

Jane.

 

 

 

 

 

 

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How Do I Know?

Recently, at church, the choir sang the Christmas song, “Mary Did You Know?”  It was one of those Godly coincidences, since on the way to church I was pondering “How do I know?”

How could Mary possibly know?  No matter that an Angel had visited and informed her. It was too hard for any person to fully absorb and understand.  Sometimes that’s how I feel about caregiving.  How could we possibly know? I read the books, I am even writing one. Yes, there are some pointers, some facts to remember – strategies to use.  Some things I have read have helped guide me.  And I certainly hope those suggestions I relay when speaking or writing, really do help someone out there in caregiving world.  But for some things – I just have no idea.

I write a lot about emotions. I am an emotional person.   I feel them, express them, and recognize them in others.  But sometimes I don’t know what to do with them. This week has been tough. My beloved dog – the best dog I have ever owned, died.  He’s “just a dog” but I loved him and he loved me and my heart aches.  Then I made the seasonal trek to the family graves, to put out the Christmas flowers.  I had good chats with each family member – except my brother.  I am still too angry at him to chat.  He left me too soon.  I can’t except it, can’t get settled with it, miss him way too much and am way too angry that he took care of everyone else and not himself and left me.  Of course he left others – his wife is still heart broken, his children are grieving, as well as my sister.  But right now I am grappling with my own feelings. I don’t have the energy for anyone else’s.

And there is my mother, balancing somewhere in that continuum – moving toward death but not there yet – not living either.  She has no joy. She is miserable and frustrated. I see it in her face, in her gestures.  All of us, family and private caregivers, as well as staff, are trying hard to give her some positive quality of life.  But is it working? We ply her with all sorts of her favorite foods to entice her to eat. We work diligently to keep her bowels moving, although she resists our efforts and even resents our tactics. She becomes dehydrated easily so we coerce, beg and plead for her to drink more fluids.  She is now receiving “power shakes” three times a day to provide additional nutrition.   We urge her to try to walk, to move, to pay attention. We urge her to speak loudly so we can understand her. We beg her to allow us to clean her teeth.

I visited her early in the morning  before I went to church. She had some congestion. She actually needs to cough.  The doctor has advised we should cup our hand and pound her back as she coughs.  I remind her of this as I pound and urge her to “cough it up.”  She holds back. It takes too much energy to cough.  She then begins to cry.  And I stop and ponder.  How do I know? How do I know when to really stop?

I know about end of life decisions. I have taken Hospice training. I have participated in many end of life workshops and presentations. I know when to say “stop” to chemotherapy or to say no to a feeding tube. But I don’t know how or when to stop this – bringing her snacks, begging her to drink, finding new ways to stimulate her bowels to move. How do I know when to stop? When to tell everyone else to stop?

You see, I have asked her. When she has had better days, I have asked her if she is ready to stop trying and she tells me no, quite firmly.  I have had family members who fought hard to the end, and then just went, and those who have said, “It’s time to stop, I am ready.”  But my mother doesn’t seem to want to fight in the right way, – she doesn’t want to eat enough, she doesn’t want to drink enough, she doesn’t want to take the pills, she doesn’t want to exercise.  So then, how do I know?

So it is a few days before Christmas and I am feeling very “Bah Humbug”.  I want to shout, “My brother died, my dog died, my mom in is limbo and I just want to hit someone!”  Everyone should want me at their holiday gathering!

But today when I stopped by the nursing home, she was there.  She looked at me with clear eyes, she smiled and said, “Hey girl! What are you doing here?”

And I was joyous to say, “I am here to see you!”

It was enough.  It made me want to say “Merry Christmas!”  It made me know that when the time is really right, I will know.  It made me know that being a caregiver is many parts pain and small moments of joy.  It made me know that I love her and she loves me.

Merry Christmas to all and I wish you many small moments of joy this holiday season. Or even just one.

Holiday Ho Ho HO

Ah, the holidays are here!  Holidays and caregiving are like oil and water, dogs and cats, the Patriots and the Giants…you get it. To your already busy schedule, add the myriad of holiday tasks.  And how  do you keep your head on straight over the holiday season?  I don’t know!  Other than to find the humor, count the blessings amidst the chaos, say a prayer for strength and maybe, let something go.

I made the decision this year, to let go of my holiday party. Some years I have two – a daytime luncheon for my lady friends and an evening gathering for neighbors, couple friends and all the other folks we want to see!  Not this year. I am letting it go.  Too tired, too flustered, too busy. But mostly just too tired.  I cannot fathom completing all that would be required- decorating, cleaning, cooking, whew!  Can’t muster it this year.   And that’s ok. I can just use the time to dream up ideas for next year!

I host the family Thanksgiving. We travel to the south for Christmas where there are children and Santa must visit, which makes travel unwieldy. So everyone comes to my house for Thanksgiving.  My sister and her family which includes three teenagers, and my daughter, son-in-law and two grandbabies gathered.  Unfortunately , my daughter waited too late to call the kennel so she had to bring her dog. This added to my two dogs, the cat that adopted me this summer, and my mom’s parakeet.  With Mom’s move from assisted living to a nursing home, Birdie had to come to live with me.  This means more gates in my house, to keep the cat and the bird separated.  (One meeting, the first week, with the cage ending up on the floor, Birdie escaping, the cat looking confused at all the confusion, and my blood pressure hitting high numbers as I frantically searched for the squawking but uninjured parakeet, was exciting!)

It was a fun week  but sad as well.  My mom is not doing well, her decline is obvious and while in the fog of dementia she is still able to make her anger and power known.  Refusing her meds, clamping her mouth shut and not eating – and of course there are her consistent bowel issues.  My nieces and nephew spent time with her but her attention span is so short- she cannot focus on visitors- so it was unclear if she really knew who they were.  We took the babies, and she would smile and seemed to enjoy them for a few minutes but would quickly retreat back to her agitation and fog.

On Thanksiving morning, I visited my mom early while my guests were sleeping in.    Mom was refusing breakfast.  I brought some home baked muffins and sweet potato pie. I kissed her cheek, cajoled her, begged her, tried to entice her with a bite.  I had a spoon in one hand and napkins in the other and was leaning in with a  yummy bite when WHAM!  She balled her fist and nailed me right in the nose!  I said to myself, “Ok, Mom,   that’s it.  I am sorry but  if you don’t want to eat, so be it!!  I have a housefull of family that DOES want to eat!”  I kissed her goodby. Her private caregiver would try later to entice her with treats as I drove home to put in the turkey.

Then there is my geriatric horse. 31 years old and only in the past year has he had some geriatric issues that have taken more of my time and attention,  He has been in my life for 26 years and provided much joy. Currently, he has a mystery sore on his tongue that requires an expensive ointment applied twice daily.

Then suddenly, shortly after my family guests  left for home,  my sweet dog BB, a handsome collie mix, began acting strange.  It began at about 6:30 p.m. and got worse as the evening wore on. I packed him up at 9:30 p.m and off we went to the emergency vet.  At 3:00 a.m. I arrived back home, after he had survived emergency abdominal surgery!  I had to be back at 7:00 a.m.to pick him up and take him to our regular vet so I simply climbed in bed in my clothes.

The next morning I was off and running, after brushing my teeth and pulling my hair in to a pony tail. There is something to be said for the convenience of sleeping in your clothes.  I picked B.B. up  and delivered him to our vet’s office so they could assess him post surgery and continue IV fluids and pain meds.  Leaving him in good hands, I visited my horse and applied the morning tongue ointment. Then off to the nursing home to take some supplies to my mom and check on her.   Back to the house to begin the “after company” clean up.  and shoot, while I was at it, I pulled out the outdoor Christmas decorations and put those up.  From the outside, no one would know my ” bah humbug” attitude this year!

At the end of the day the vet called. She had been trying to get B.B. to eat. She wanted to make sure “the gut” was working well.  He usually won’t eat much when out of his comfort zone so she suggested he come home for the night and I could try to get him to eat.  I picked him up, got him home with all his new meds, and urged him to take a few bites, but he was not having it.  I tucked him in to his doggie bed and ran off to the barn to do evening”tongue duty”.  I would try again later. At least he had not punched me in the nose.

As I was leaving the barn, my phone rang. It was  the nurse, Frank from the nursing home. Mother was refusing her meds, had spit them back at him twice. He was flustered as mother had been compliant with him since her arrival and he was most  proud that she seemed to like him.   Since I was already out and about, I told him I would be there shortly.

Lately, mom’s favorite treat is ice cream. We have a small frig. with a tiny freezer in her room and I try to keep it stocked with those small ice cream cups.  But in the midst of the chaos, she had run out and I had forgotten to pick some up when I had taken supplies earlier in the day.  I ran through the McDonalds drive thru to get a sundae.  I ordered, proceeded to the first window to pay – and off I zipped to the nursing home. Until I realized I had forgotten to stop at the second window for the sundae.  Quick u turn and  back to McDonalds.

The ice cream worked and mom was tucked in bed after a yummy sundae with a few  crushed pills inside.  I finally arrived  home and sat down on my kitchen floor to feed my doggie patient by hand.  I was exhausted and really needed a Diet Coke to pick me up a bit.  I asked my husband if he would mind getting one for me and he announced, ” We are out.”

I could cry, I could screem, I could flail and go find a bridge from which to jump.

I did think a few choice curse words and then simply bowed my head and prayed for strength. And I remembered those sweet babies and the way they felt as I cuddled them  while they visited.  I recall their giggles in the bathtub.  And I think of my two year old grandson sitting at the dinner table a few nights ago.  He calls us ” Ma” and “Pa” – his personal shortened version of Grandma and Grandpa. He sat there with spaghetti on his chin, his Spiderman fork in his cherubic little hand.  He cocked his head to the side and proclaimed, “My have fun at Ma, Pa’s house!”

That is the Thanksgiving blessing I will hold on to as we move on to December and proceed to the New Year.  Exhausted, but knowing I am still very blessed.  I hope you, too  can find some  small blessing that will carry you through to 2016.

With love,

Jane.

 

 

Sacrifice

This week I read an article a friend of mine shared on Facebook.  It had to do with families who have special needs children.  I agreed with most of the premise in the article. However, the author stated that nursing homes would be empty if only family members were willing to sacrifice.  That – I certainly don’t agree with.

No, I don’t have a special needs child.  I do have a cousin with two special needs children, and my husband had a sister who was developmentally challenged.   I have watched both families struggle to make sure all were well cared for.    For 15 years I have worked with families facing tough situations and challenges as they struggled to provide care for a loved one with Alzheimer’s.  And I have a mother who is in failing health with two progressive, degenerative diseases.

I actually did the brave but probably stupid move of commenting on the article.  My comment was simply that “families struggle mightily with tough decisions and sometimes there are extenuating circumstances and situations where the right decision just might be a nursing facility.  I don’t think we should ever “judge” what we view as someone else’s sacrifice”.  And lo and behold the author of the article responded very angrily.  She informed me that it was “trendy” to tell others not to judge and that there was absolutely no reason why someone, no matter the condition/illness/etc. couldn’t be cared for at home.

Clearly, for both that author and me, if we put it out there, we must expect that someone might just disagree with us. That is a risk I take every time I post a blog – or post anything on social media.  So, first, she needs to toughen up!

But secondly, seriously, now dare we, any of us, sit back and judge or even challenge, from afar what constitutes “sacrifice” for someone else?

I learned from years of facilitating support groups, that one person cannot and should not judge another person’s pain.   Sure, you have the fakers out there, who try to exaggerate their hurt or pain for whatever warped psychological reason.   But in general, your pain is your pain.  We should never try to gauge if your pain hurts more than my pain.  There is no way to measure or prove whose pain is more intense or “worse” so don’t even try.   The same goes for sacrifice.

Each family situation is different when it comes to caring for a loved one with a serious health or developmental challenge.  And each family may come up with a different solution.  I caution families to “never say never” – never make specific promises or rash declarations about what you will or will not do, because you simply don’t know what the future may hold and what sounded like a great solution now, may not work a year down the road.  Finances, other family issues and challenges, what other resources and assistance are available, your own health challenges, might all be a factor in decisions about care.

I do know one thing for sure. (to  paraphrase Oprah) Actually I know several things for sure about caregiving and one of them is, it will be harder than you think.  No matter how determined you are, or how organized, or how many resources you have, it WILL be more difficult that you thought it would be.

And the one difficulty that you simply cannot know or prepare for is the emotional challenge.  In fact, that may be the biggest sacrifice one makes as a caregiver.  You will sacrifice your emotions. You will begin a ride on a roller coaster of unfathomable twists and turns, highs and lows.  The guilt will hang over you like a huge dark cloud. You will second guess yourself at every turn.  You will research and consider and ask others, and read books and in your heart know that what you are doing is the best thing, but then guilt will creep in.  It will nag you and harangue you like no other emotion.

My family and I did all we could do to keep our mother in her home. Her illness and our circumstances, her doctor’s advice, and two consecutive broken hips finally made that impossible.   And frankly, it made sense.  Why should we spend mother’s resources on heating a huge house when she lived in two rooms? Why should we spend resources on extensive repairs when we may need that money to provide for her personal and medical needs for many years to come? Why should we keep her somewhere, where none of us live? Where we cannot be there at a moment’s notice to assist or be with her?

Assisted living met our needs for many years.  But even in assisted living, I was on call at all times.  My mom’s needs super cede my own.  I have cancelled trips, spent many sleepless nights – some just worrying but some in the recliner in her room at the assisted living- and even left my full time job in order to be available for whatever she needs, whenever she needs it. But advanced illness means she must how receive more intense care.  And a skilled nursing facility is where she can receive that care, 24 hours per day, 7 days per week. My own home is not designed to care for an ailing aged person properly.  I am not a nurse and there are simply things I cannot do for my mother.   24 hour nursing care in the home is cost prohibitive.  Yet someone else can write an article that says “nursing homes would be empty if families were willing to sacrifice” and the guilt returns as my anger rises.

Heck yes, there are some facilities where, as I often say “I wouldn’t put my dog there”.  But facilities are necessary – like it or not.  And we as a society should make sure those places are regulated and monitored properly.  They should be  expected to and held accountable for providing quality care – not just on  the logo on the side of their van- but in the actual day to day care for those who reside behind their walls.  But don’t tell me what I have sacrificed or not sacrificed.   Don’t tell me what I “should” do, when I have pondered, prayed, sought wise counsel and spent many hours seeing to my mother’s wellbeing.

This morning, my mother shed tears and said she wanted to go back to her home. But in this place, where she now resides, wounds have healed; medicines are given properly and in a timely manner; equipment she needs is ready at hand; and the extra human hands we need are nearby as well.  My heart broke once again, and I shed my own tears.  But I know this is the best place for her at this time.  Whether our sacrifice, both mine and my mother’s is greater or less than another’s is not the point.  That both of us are sacrificing much and that love is at the core of all most certainly is the point.

Positive Change?

In the past couple of weeks I had the opportunity to attend the first ever Healthy Aging Summit in Washington DC where I presented an academic poster and I was invited to be a presenter at the Florida Council on Aging’s Annual Conference on Aging.

Usually, I am busy blogging about dementia care of the lack there of or information that I hope will be helpful for caregivers.  While this post will certainly speak to those issues, I want to share some information that I have gathered from these two conferences and some random thoughts about some of what I heard and learned.

First, I have always thought that we brilliant baby boomers should be able to offer solutions to some of the “aging” challenges we bring as we age!  Turns out I was correct.

The opening keynote speaker at the Healthy Aging Summit was Colin Milner, the CEO of The International Council on Active Aging gave me a new term during his presentation – Longevity Revolution.  Not only is that a more positive description than the Silver Tsunami term or Elder Quake  that has become popular,  it spoke to his philosophy that we should begin to  look at aging in America as an opportunity rather than a challenge.   Milner challenged attendees to look at the possibilities of aging rather than the challenges.

I liked that term, “Longevity Revolution” now that we ARE living longer.  I also liked the comment by Moderator Dr. Don Wright, Deputy Assistant Secretary for Healthcare Quality within the Department of Health and Human Services, who said “We want people to die young as late in life as possible.”    That would certainly be my goal – and why I often say I want to be hit by a bus. No one wants to “live” in a state of decline, dysfunction and dependence.   We all want to go, after a great and active day, quietly in our sleep!

This conference was interesting as well, because I serve on the board of directors of an organization that hopes to foster opportunities for our citizens to live and age with dignity and purpose.  Within that organization we are facilitating a project   looking at how we could change/adapt/redeploy resources to meet the needs our aging population presents.  One of the ideas is that we might focus on the entrepreneurial opportunities this could provide.  

I am fortified and pleased that at the conference I am currently attending, it appears folks are tapping in to that entrepreneurial spirit. One company will deliver nutritious frozen meals to your home. These meals can be simply warmed up in the microwave.  Yes, there is a cost.  But many of us would pay for that service, to ensure that our parents or even for ourselves are receiving proper nutrition!  Or how about the company that is starting a “shared housing” business?  What if you had an extra room in your house that you were willing to rent at a very reasonable rate and you simply needed a drive to the grocery store and to your doctor appointments a couple of times per month? Or let’s say you are retired, live alone and you just need someone to mow your yard or shovel your snow?    This company will screen both you and your potential “tenants” for compatibility and of course, safety – they do criminal background checks – and then connects the two of you.   Sort of like those on-line dating sites, but no dating involved!  This would be perfect for college students who need an inexpensive place to live and could provide some simple assistance for those who can still remain in their own home with a little help.    Yes, it’s similar to the “golden girls” concept but intergenerational and would be helpful for those who may not have a group of friends with whom to reside.

The down side to some of this positive thinking is that, as we try to put a positive spin on aging, we must still accept the fact that we all DO age.  One presenter spoke the need for more personal responsibility, meaning that many of us KNOW what we should do to improve our health as we age, but we simply don’t do it.  (Put DOWN the donut and exercise, friends!!)  However, we must be careful with this theory. As one aging expert said “Something in our bodies will break as we age, through no fault of our own!”  We mustn’t make those who develop an illness or find their abilities diminishing as they age feel guilty, as though they have done something wrong.   Certainly, that would be the pendulum swinging too far in the other direction.

And as I listened to two Alzheimer’s researchers speak about healthy cognitive aging, I thought of all those brilliant and otherwise healthy individuals I have known who have had to face the challenge of Alzheimer’s disease.   It’s hard to put a positive spin on that.  I was a bit miffed and felt that maybe they were trying to be positive about a topic that has no positive aspect.  But then  I had this thought,  maybe as we begin to think more positively about our aging population, we will lose the stigma that Alzheimer’s and other dementias still carry.  Alzheimer’s has been easy to ignore.  It has been seen as an illness only afflicting the “old”.  Those with Alzheimer’s have not often remained in the public eye – thus easy to ignore.  But that is changing and it can’t happen too soon. With more individuals being diagnosed earlier in the course of the disease and those with Young Onset speaking out, we are now hearing their voices and seeing their faces.  Maybe this will motivate our elected officials to put their money and policies where their mouth is. Not one candidate says Alzheimer’s research is not important.  Maybe we can use our power and our voices to compel them to increase the funding to meet the need for more effective treatments and a cure.  No more lip service, let’s demand action.

The times are changing and it is important that those who work with the aging population be flexible as these times change. This week, I not only presented a workshop on “Sex in Long Term Care” at a large aging conference, I listed to another presenter discuss sex after age 60.  Some of you may not want to talk about sex, especially in the context of your parents or grandparents who live in long term care!  That’s why the subtitle of my presentation is “Eeeew or OK?”, because many do think of it is an “eeeew” topic!  However, as we baby boomers, who coined the phrase “make love, not war” move in to long term care it is an important topic for both those who reside in long term care and those who work in long term care.  In addition, whether you like it or not, believe it is “normal” or not, hate the topic or embrace the topic, the Caitlyn Jenners of the world are aging and may, at some point, reside in long term care. Are we ready for that?

So, today, I am intrigued at the possibilities.  Maybe, this “longevity revolution” can be an impetus for positive change, not just a tsunami or quake!  And just as the baby boomers influenced the work place, forced civil rights changes and lead the sexual revolution – we can be the motivators and even the innovators as we enter our final years. 

My Grief

So, grief is a funny thing.  Maybe funny is not the right word. But grief can make you do some pretty weird/odd things that can be downright funny.  Like the person who won’t let anyone move the lawn mower from where Dad left it last.  He did not die on the lawn mower, nor did he particularly like mowing or like that lawn mower, but you can’t move it because that is where Dad left it the last time he finished mowing.  It has now become a monument to Dad.  Or the fact that we walk up to the casket and say “Oh, she looks so good.”  But how good can she look if she is dead?   Or we say “Oh, she looks so bad.”  Well, she should look bad, something killed her. Or we put pens in Dad’s pocket because he always had pens in his pocket. Yet he won’t be needing pens anymore.  Or we make sure the person has on underwear.  Does he need underwear where he is going? And actually, he is already gone. Only  a shell remains.   Pretty funny, really.

Or maybe a better word is interesting, or complicated or confusing.  I suppose that’s why sociologists, psychologists and theologians write about it.

It’s fascinating that it turns your brain to mush.  You can’t think straight, it hurts your heart and then seems to land with a thud, like a brick, in the pit of your stomach. It drags you down.

It makes you do things like run around digging through boxes to find all the old pictures of the person you have lost and you put a rubber band around them and keep them by your bed.  And then you can’t sleep and get up and dig some more because you can’t find that one certain picture you know you have somewhere but you haven’t seen it for ages.   All of a sudden, this person you haven’t dreamed about in ages is the star of every dream all night long for weeks.

You want to run from grief, avoid it, deny it.  But the experts tell you that you have to fully experience it if you ever want it to go away.   Why must you fully experience something  just to get it to go away?    Why can’t it just go away without me experiencing every part of it?  If I choose not to partake of the ice cream I am offered it will just melt away.  I don’t have to experience the brain freeze – I don’t want it, so I refuse it and it melts– it just melts away.  Why can’t grief be like that?  Someone wrote that there should be a statute of limitations on grief. After 30 days it just stops -can’t be felt any more.  There would no longer be the brick in your core.

And what about the statute of limitations on those around you continuing to be understanding?  How long can you say, “Forgive me for being so crappy, but my brother just died!” and be forgiven?  Life goes on, meetings occur, jobs continue, so you pretend to be paying attention – but the brick still sits, and weighs you down, preoccupies your thoughts, steals your energy.

Grief makes you have awful thoughts like “ Why is my mother slowly wasting away in the blur of dementia, not enjoying life, not even truly experiencing life –  yet my brother, who was full of vigor and  had plans- things yet to do –  died?”

Grief makes you want to pull those you cherish closer – to hold them tight. Yet grief can make you lash out at those close to you and cause you to push them away.

Grief makes everything more annoying.  Some people are always going to be annoying or insensitive or simply stupid.  Someone advised, “Don’t sweat it, losing someone important in your life allows you to ignore the small stuff.”  But no, losing someone important in your life makes those annoying, insensitive stupid people MORE annoying!  I just lost someone I love – I shouldn’t have to put up with this small stuff, like your stupidity! Get out of my way, get out of my face, get out of my life and stop being so stupid!

Grief makes you want to stay busy so you don’t have to think about it, yet grief stymies you – causes you to stand in the middle of the room and feel sad and bad and you can’t move.   Grief makes your wheels just spin.

Grief makes those joyous times that may occur in the weeks or months after your loss, a bit less joyous, more bittersweet.  Yet shouldn’t it be the opposite? Shouldn’t you ENJOY those moments of joy more vigorously knowing they could end in a blink of any eye?

Grief makes you want to talk about it, to tell everyone how sad you feel. But grief makes you want to curl up in a ball and not talk and be left alone.

So what do we do?  I suppose we do it all. Be silly, funny, grouchy, sad, impatient, hold close, push away and suffer through.  And maybe write it down.

William Shakespeare wrote these words in Macbeth, “Give sorrow words; the grief that does not speak knits up the o-er wrought heart and bids it break.”   So I write my grief, in the hope that it will knit my heart.

Happy Memorial Day

I overheard the conversation as I was leaving my Mother’s assisted living earlier today.

” Mom, we ARE going to the doctor!”  said the son as he maneuvered his mother’s wheel chair through the parking lot.

From her wheelchair Mom said loudly, ” But this is NOT the way to my doctor’s office. You don’t understand. My legs hurt and I need to see the doctor!”

“Mom,” the son answered with a sigh, ” this is my car.  I am going to put you in it, and we ARE going to see your doctor about your legs.  Honest, Mom.  I am just trying to help you.”

I wanted to stop, pat him on the back and say ” I understand.”

It was all so familiar – the frustration, the confusion from his Mom, the exasperation for them both, and that sigh – how well I recognize that sigh.

It’s Memorial Day weekend and it is the designated federal holiday to honor those Americans who have died while in military service. It used to be called “Decoration Day” as the task of the weekend was to decorate graves. In our family, I recall it as a typically cold and rainy weekend, when we gathered all the flowers from our yard and that of the aunts and uncles, neighbors and grandparents, and took the homemade floral arrangements to each of the cemeteries where grandparents, and other family members were buried.  It seemed to me all my other friends went on picnics, or to the local pool opening, but nope, not me. In our family we took our  “grave decorating” seriously.  In fact, that task has now fallen to me. I have shared in this blog some of my adventures changing the flowers seasonally as my Mother has passed on that family duty to me.

I share this because also today,  I  read an article about the south and some of its traditions. The author stated that ” things stand for things” in the south. He meant that seemingly insignificant “things” may have signficant meaning in southern families.  In his case, a plate of deviled eggs reminded him of his grandmother and the love and loyalty his family felt for her.  And, of course, it  is probably not exclusive to the south.   In my family, I think, Memorial Day stands for the same thing as his deviled eggs.

Memorial Day for my family, was first and foremost, about visiting graves. It’s not that other families don’t care.  In fact, many families don’t have a grave to visit.  With cremation becoming more commonplace, there may not be an actual grave site.  Or, it may be that the family members live far away and cannot visit. But for us, it was a time-honored tradition.  And while I clearly recall my childhood dismay at having to drag about the jars of water and the flowers wrapped in newspaper while it seemed all my friends were doing “fun stuff”, I also recall the stories of those departed loved ones that were shared during those visits,   I remember my father’s tears one year as we visited his mother’s grave.  My father was one tough cookie, and it made am impression on me that this “man’s man” shed tears that day because he missed his mother.

Sometimes I wonder what will happen as I age and may become  physically unable to make the rounds   of all the cemeteries. Or what if we finally really do decide to move further south to escape the nasty winters that are becoming even more nasty each year?  Who will do the grave tending?  Will my own children, who are  members of an even more busy and geographically scattered generation, put flowers on my grave let alone all the other relatives that are on my grave tending rotation?

But then I realize, there are many ways to show we care, to share our family loyalty and to tend to our loved ones.   Just as that son I saw earlier today was showing is family loyalty and care.  While this may seem like a rather rambling blog post, it actually does have a point.  We Sandwich Caregivers stand for things – like the article I read stated.   We stand for love and loyalty, for responsibility, for family and tradition.  In fact, we also stand for “service” and in many ways we stand for “battle”.  We are often warriors – battling the healthcare system, battling our loved ones who may not always make choices that are good for them ( “Mom, you really DO need to take those pills. They HELP you!!”),  battling diseases that steal  memories and cause pain for those we love.

So, the true point is,  I  want to wish each and every one of you a Happy Memorial Day – as you face battles and meet the challenges that caregivers face daily. This Memorial Day weekend, I hope your memories are good ones, I hope your picnics have no ants. I hope your holiday travels are safe. I hope your cemetery visits involve sunshine and bright blossoms.  And I hope you realize that all you do for those for whom you care, stands for something  – something good and noble and true.