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.

Mad and Still Alice

Last weekend, I saw the movie Still Alice.  I left the theater furious.   Yes, Julianne Moore did give an Oscar worthy performance.  Yes, the film did accurately portray what we know as “Early or Young Onset Alzheimer’s “.  Yes the other movie viewers were quiet and courteous, the temperature was find and the seat was comfortable. And my popcorn was good.  So why was I furious?

For more than 12 years, I served as the Executive Director of the Alzheimer’s Association, WV Chapter.  Since my retirement, I continue to interact with those with the disease and with their caregivers through my speaking and my website www.sandwichcaring.com. .  And I have worked with and met many wonderful people who work very hard to end this disease.    I read the book Still Alice when it was first released years ago. I have met the author Lisa Genova and was thrilled when it was to become a movie.  I hoped it would be the impetus to a broader conversation and movement.

In the nearly empty theater, a woman who sat behind me said as the movie ended, “Boy that was a downer.”  It was about Alzheimer’s disease for heaven sakes. What did she expect- jokes and giggles?  Last week, I spoke to a group of about 60 folks who work in the field of long term care. I asked if any of them had seen the movie.  Not one person raised their hand.  One man said, “That would be too sad. “ I have casually asked many friends if they have seen the movie, only one has.

You see, I know and have known too many “Alice’s”.   I am watching someone very close to me, succumb to this disease.   Heck, there are millions of people in the United States who have Alzheimer’s disease – more than five million to be more exact.  And yet, it is the only one of the ten leading causes of death that is on the rise.   Research funding for Alzheimer’s continues to lag behind.  There are also millions of exhausted caregivers.   Yet, few people want to talk about it.  Folks don’t want to see a movie about it.  Many doctors don’t want to diagnose it. There are families who don’t want to admit that someone they know and love has it – they find it embarrassing.  Everyone I know says they are terribly afraid of this disease, that it would be “the worst” should they develop Alzheimer’s.  But many of them  do nothing about that fear.   And all that makes me sad, frustrated, disappointed, but mostly, furious.  It’s gone on too long.

It’s time now – to talk about it.  We need to say the words out loud. We need to make it a health priority.  We need to make it a campaign issue.   Why don’t we ask every single presidential hopeful what he or she plans to do about this disease?   Not how they feel, or if they care, but what they plan to DO.  We ask them all sorts of questions about guns, war, abortions, and jobs.  We even ask them who they think will win the NCAA tournament.  Let’s add THIS to the mix – a disease that will cripple Medicare, a disease that kills more than prostate and breast cancer combined, a disease that ravages minds and families.   It’s time.  And even if you don’t go see the movie, get mad.

Happy Valentine’s Day

Red hearts are everywhere, florists are busy, and chocolate lovers are delighted. Love is in the air as Valentine’s Day approaches. And it is no different at the assisted living.

Plans are underway for the annual Valentine Gala. Stan Skeens the local DJ who specializes in music from the past, has been booked. Red and silver hearts have been hung. Pink table cloths are on the tables in the dining room. Ah, but not all is sweetness and light.

Each year at Maple Top Assisted Living, a Valentine King and Queen are chosen. Residents and staff alike are urged to place their vote in the box wrapped in pink tissue paper located in the front entry area. Sounds simple, but it can be complicated.

Remember Mr. Alvarez who was having the hot and heavy affair with Martha? Well, Martha has moved out, so he is currently playing the field. He has had a few trysts with Elva, but Elva is not ready to settle on just one man. Recently, a nurse commented that she was “scarred for life” when she walked in to Don from down the hall’s room. Elva was visiting Don and they were quite “busy”. Mr. Alvarez has been energetically campaigning to be voted King this year, but his chances are slim if he is not part of a couple. While in the past, the winners have not necessarily been a couple, it seems that “couples” are the front runners this year.

Most favored in the unofficial polls seem to be Belle and Frank. Frank lives on the first floor. Belle lives on the second floor and sits at my mother’s dining table. She has told many stories over dinner, of her gentleman friends. Her husband died at a young age and after, Belle apparently never lacked male companionship. She laughed one day and shared that “they all seem to die on me, so I have to find a new man friend every couple of years.” Recently, she and Frank, have become a couple.
when weather permits, they sit outside together on the patio holding hands, and a couple of times, when her daughter has come to visit they have all gone out to dinner. They always sit side by side in their wheelchairs during the various assisted living activities.

Arbutus also sits at the same dining table. Arbutus has been a widow for many years as well, but she chose not to date after her husband’s untimely death. In fact, she disapproves of older people dating and has pointed that out to Belle on a few occasions. Just last week, they weren’t speaking because She informed Belle that she thought it was silly for Belle and Frank to think about being Valentine King and Queen. That made for a few tense meals.

As the day approaches, tensions increase. The Activities staff have purchased formal attire at the local second hand store for those residents who need something to wear to the Gala. Taffeta formals are altered, pink tulle is steamed to get out the wrinkles. Mr. Alvarez’s daughter is livid that a “used” suit and bright red velvet bow tie has been given to him to wear. “Dad has perfectly good suits to wear. He does not need to wear second hand clothes!” And I have to admit the over-sized red velvet bow tie looked like it had lived its first life in the 70’s.

As she has each year, my mom says she is not going to attend. And then, as she has each year, at the last minute she decides she WILL attend. There is no way she is going to wear a “prom dress” so we go through her closet and find a lovely peach wool skirt, with a matching silk knit cardigan sweater that pleases her. She has a cream silk blouse with peach embroidery to go under the cardigan. We get out her pearl and rhinestone dressy earrings and her tri-strand of pearls for her neckline. Her cream pumps coordinate beautifully. It’s a challenge to get the panty hose on (each year it becomes more difficult) but we get the job done. She looks lovely – like an 87 year old woman should look for such an event. And off we go!

I complement Mr. Alvarez as he arrives. His daughter had called me earlier in the day to tell me she wasn’t going to be able to attend. She asked that I make sure he wore what SHE had picked out for him. I also promised I would take a photo and text it to her. He smiles proudly as I snap the photo. Even “Grandma” from downstairs arrives in party attire. Grandma (that’s what everyone calls her) usually wears a nightgown and is barefoot, but tonight she has on a basic black dress and bright pink slipper socks.

Glenn Miller music is playing and there are two punch bowls. Belle excitedly tells me that the one on the right is “spiked”. She is in pink with a mink stole around her shoulders and beside her, holding her hand, is Frank looking pleased and dapper in his navy blazer and tan slacks. It has been announced that he and Belle are the King and Queen! I stand to the side watching the action. A gentleman is seated nearby that I have not seen before. He stops the Activity Director, Janet as she rushes by. He points to my mother who is sitting in her wheelchair with her back to him and says “Turn her around so I can see how she looks.” So Janet spins my mother around as she says “Ruth, I think you have an admirer!”

“Oh my, you look beautiful” he says as he smiles at my mother. She gives him a cool, disinterested look as she says “Thank you. You look nice as well” and then spins around again quickly. She is NOT interested in any male companionship. The appetizers are yummy. Chocolate covered strawberries are the sweet treat and the punch is going quickly. Mr. Reynolds, who loves to dance, is dancing with one of the nurses. It is 6:30 p.m. and it’s Valentine’s Day at the assisted living.

Compassion Fatigue

Everyone experiences their loved one’s dementia differently. So does dementia affect each person differently. I have heard family members describe the person who has become more loving and demonstrative. Or an outgoing person becomes more sullen. My mother’s fear, negativity and demanding attitude simply became more pronounced. In the beginning, I worked hard to bring her comfort and to find things that would elicit some happiness. Most efforts were short lived, but not just because of her short memory. It seemed she had simply lost the ability to enjoy.

However, no matter what traits are amplified or lost, the disease takes it’s toll on both the person with and the caregiver. While a shadow now looms over my mother’s mind and body, I too, feel as though a dark shadow is looming over my life. It is a great and exhausting challenge just fighting the negative gloom.

I am currently suffering from “compassion fatigue”. I first heard the term in a discussion of healthcare professionals. It was first diagnosed in nurses in the 1950s. Sufferers can exhibit several symptoms including hopelessness, a decrease in experiences of pleasure, constant stress and anxiety, sleeplessness or nightmares, and a pervasive negative attitude. It is common among individuals that work directly with trauma victims such as nurses, psychologists, and first responders. It is also sometimes referred to as secondary traumatic stress. Some also describe it as secondary traumatic stress.

One source I read said that people who are overly conscientious, perfectionists, and self-giving are more likely to suffer from secondary traumatic stress. Ah, but are those not the attributes of a good caregiver? One who is self giving and conscientious? and of course when it comes to someone we care about, certainly we want the care to be as perfect as possible. Lately, however, it seems that even “good enough care” takes an exhausting toll on my energy and emotions.

In the professional world, to overcome compassion fatigue, it is recommended that the individual change jobs for a while. Hospice nurses often need to take a break, to do some other nursing tasks for a period of time, after working with the dying. Good self care, exercise, proper sleep, good nutrition are also recommended.

I know the “rules”. I know the recommendations. I preach them to others. So, as a caregiver, I do take opportunities to rest, to take a few days off, to continue my hobbies and interests. I am blessed in that we have paid caregivers, wonderful, loving and loyal ladies who spend many hours caring for my mother. But the toll is still being paid. Lately I notice that “fun” is not as much fun. Spending time doing the things I love… don’t have the usual calming effect. They seem more like a chore. And then it is back to the same. Watching a loved one, slowly, oh so slowly, decline. And my emotional fatigue returns with a vengence.

I find myself overwhelmed with guilt when I realize I am thinking, ” It is time to die now. This has gone on long enough.” How could I have those thoughts about a loved one? What kind of person am I if I have those thoughts? And then feelings of despair and failure arrive with the guilt.

I say to myself, it is not about me. It is not even about my loved one, it is about this insidious disease. This cruel, underfunded, too often ignored, blasted, disease. I have worked for nearly 14 years for this cause. I have participated in advocacy, written letters to government leaders, raised funds for research, spoken at public events, and maintained passion and hope. But the fatigue is taking it’s toll.

I have often wondered why this particular disease has not garnered the widespread funding and support that so many others have – with results that include fewer deaths – more survivors. It seems that I now find myself wanting to do what I have seen so many other caregivers do. I want to RUN, I want to FORGET, I want to do something far different and distracting – far from the realm of despair and yet….

I cannot. Tomorrow there are tasks to be done, comforts to be offered, needs to be met. Lately she is not sure of where she is. When will she wonder who I am? Yet, I am her touch stone. I am her security. I am her advocate. I am her daughter.

The Relationship

This is not meant to offend anyone.  It does not reflect on my personal beliefs, nor is it meant to be a statement on our culture or current news.  It is, however, meant to highlight, some of the challenges, the need for humor, the confusion and the frustrations you may experience when you are caring for a person with dementia.

My mother has reached the point in her dementia where she has difficulty being articulate. Often her words make no sense at all, or a phrase or a few words may give me a hint as to what she means.  Then there are times when she is quite articulate and speaks in complete sentences.  Several times over the past few months my mother has either made statements or asked questions of me that were quite confusing.  Once she looked at me as I was leaving after visiting her at the assisted living and said “So, are you going on a date?”

I answered, “Um, no mom. I am NOT going on a date. I am going home to my husband, John. Remember him?”

She rolled her eyes at me and said disgustedly, “Yes, I remember him, do YOU?”

A week or so later, she said something to me about “that man you are with”.  The way she said it, I knew she was not happy.  Again, I was quite confused. I was visiting her alone, and she actually really likes my husband so I didn’t think she was talking about him.  I asked her a few questions trying to discern what she was talking about, but I just couldn’t figure it out.   Later, I even mentioned it to my sister and we were both at a quandary as to what she might be thinking or trying to say.

Mother has complained over the past several months about one of the male aides at the facility.  She mentioned him to one of her private caregivers and to me as well.  He is a tall, thin African-American young man named Charles. I met him when Mom was going through her extreme delirium this summer and I spent a few nights with her. He works the night shift. He seemed attentive and concerned about mother.  Mother calls him “that tall, skinny, Black one.”    I have questioned her about why she didn’t like him, but could not get any clear answers.  I even asked a couple of the other ladies at the facility about him and they both said he was quite nice and very conscientious.

Last week mother mentioned him again and I could tell she was trying to tell me about an early morning incident.  This young man is the one who got her up and dressed that morning.

Now to back track, when mother broke her hip the first time, she had a rude awakening with male nurses at the hospital. Mother had been in good health and except for hospital visits to have my sister and me she had not been in the hospital until the first hip break.  She was not used to this whole male nurse concept and would NOT let them do any personal care for her at all.  This continued when she moved in to the assisted living.  Jeff was a great nurse and mother liked him a lot, but she would not let him assist her in going to the bathroom or getting dressed.  This went on for a few months and finally she accepted Jeff and allowed him to provide whatever assistance she needed.  She and Jeff are great pals now! Thus, I thought she was over the “man thing.”

Back to my story, last week I rode up on the elevator with Charles so I took the opportunity to ask him about mother.  I said “Charles, does my mom give you a hard time in the mornings?”

“Oh, yes, maam.” he answered. “She sure does sometimes, but it’s alright.  I don’t pay any attention to it.”

“Well, I know she can be pretty grouchy in the morning. I am sorry if she is hateful or hard to deal with.” I said.

He laughed and said, “Oh yes, just this morning I said, “Miss Ruth, it’s time to get up” and she said “Oh go to  Hell.”  But later she was nice. Don’t worry about it. I don’t. ”

Then yesterday morning Mother refused her early morning meds.  Those meds, given first thing each morning are crucial to her having a good day.  In fact, they are given very early, so they will have time to kick in and have some effect by breakfast time.

Unfortunately, in the world of long-term care, at least here in the state where we live, residents do have the right to refuse their meds.  It doesn’t matter whether they are deemed to be competent or not, if a resident refuses, the staff cannot force the issue.  Ah, but the daughter can!

I was immersed in a project.  It was late morning, but I was still in my night gown, working diligently on my computer. I needed to get the project DONE.  I was hoping for no distractions that day.  But then the phone rang.  Mom’s private caregiver was calling. When she arrived she had noticed that Mother was having extreme difficulty moving, and was more confused than usual.   Mother was visibly trembling and the caregiver alerted the nurse. The nurse informed her about Mother refusing her meds and she called me.   I threw on some clothes and off to the assisted living I sped.

I strode in to Mother’s room, NOT a happy camper.  I said, “You cannot refuse those morning meds. Those are the meds that help get you established for the day.  They are very important.  And you whine to me that you want to feel better, well you will feel WAY worse if you don’t take those pills.”

She frowned at me and denied that she had refused her meds. I told her I knew better and that she had better listen to me. She NEEDED those pills.  Then she began talking and within the words that made little sense I heard something about “that man” and suddenly I realized it was probably Charles who was with her at early morning med time.

“Mother, did you refuse those pills because you don’t like Charles? Is that what this is about?  I don’t care whether you like him or NOT, I don’t care if you don’t like it that he is a man, I don’t care if you don’t like it because he is Black,  you need to take those pills.  It is not at all about the person giving you the pills, it’s about the good those pills do for you!”  I was darn angry!

Mother looked at me then and said quite clearly. “It’s not that I don’t like him, it’s that I don’t like your relationship. You know I don’t approve of such things. I never have. You know that.”

What? Are you kidding me??  A relationship???   With Charles??? Good grief!  But now it all made sense – those comments about a date, about that man. She somehow thought I was having a “relationship” with Charles and she was correct. She would not ever have approved of such a thing.

After I recovered from the shock, after I assured mother I was not having a relationship with ANY MAN other than my husband, and after I again made it clear she was NOT to refuse those meds, I left the assisted living and called my sister to tell her the news.  She laughed and laughed and laughed – said I had made her day.   I’m so glad I could be helpful.

The Big G

The holidays require many decisions.   Real or artificial?  Colored lights or white?  Red bows or green? Which cookie do you make for the cookie exchange?  Do you send a photo card or a regular card? Include a letter?  Maybe you just won’t send cards this year. What do you get little Susie?  Little Johnny sure has grown, will he need a large or extra-large?  Do you serve beef or turkey?

My family has struggled each year for the past four years about how to spend the holidays given my mother’s illness. It doesn’t seem to get any easier.

The first Christmas after her two consecutive broken hips, she was in the skilled nursing facility for rehab.  I remember calling my sister and sobbing on Christmas Eve morning. I had gone to the facility early in the morning, with my little dog who usually made my mother smile.  I brought a plate of home-baked cookies and I planned to go pick up mom’s  favorite fast food for lunch.  I hoped to spend the day with her  and make her Christmas Eve as pleasant as possible. She greeted me with venom.  She spewed that this was my fault, that I had put her there and that it was I who was mean, and cruel and wanted her to be miserable.

No matter that this was completely and absurdly untrue, I was exhausted. Her health and her care had dominated my life  for two months.    I felt guilty that she could not be in her home or even in mine but she was not well enough.  I sat in my car sobbing as I relayed the morning’s conversation to my sister.  She listened, commiserated and after a while, I was calmer and felt that I could face the wrath of my mother once again.

The next year, we took my mother to my sister’s home in a city four hours south for Christmas.  Mother wakes up many times during the night so my sister and I took turns sleeping in mother’s room.  Then on Christmas Eve mother came down with the virus that had been running rampant at her assisted living and we had presumed she had missed.  Changing her pajamas and the sheets in the middle of the night, cleaning her up and dealing with the mess and the smells was NOT what we had hoped for from Santa.

Then, 24 hours later, I succumbed to the same lovely intestinal virus and shortly thereafter, my sister.  That year, the phrase “Bah Hum BUG” had special meaning.

The next year, the family traveled here and last year we made the trip south with my mother.  We  hired caregivers from an agency to be with mother at night so my sister and I were able to get good sleep. No one got a bug. The biggest challenge was the actual trip itself.  Holiday traffic, heavy rain, a wheelchair and bathroom stops do not mix well.

This year my mother’s condition has been a roller coaster.   She has had very good days, and some very, very bad days.  She is not as strong as she was last year.  My sister and her children could travel to us. But to complicate things, there is now the cutest 18 month old grandson in the world living in the city in the South.  His “Gampa” and I want nothing more than to be with him on Christmas morning.  Unfortunately, his other grandparents, our son-in-law’s parents, are traveling from their home in Europe to be with him this year so my daughter cannot possibly travel here to be with us on Christmas.

Some have said, “Do what you have to do to take your mother, it may be her last Christmas.”

Someone else said, “Your daughter and her family should come to you, it may be your mother’s last Christmas. “

Someone else said, “You only have an 18 month old grandson once.  You are with your mother every day. You deserve to go be with your grandson.”

There have been numerous phone conversations.  We have discussed a variety of scenarios.  We have consulted Mother’s doctor. The bottom line is, this year no solution is going to be ideal.  And the fact of the matter is, the biggest challenge we are facing is the big G – Guilt.

That big G is the enemy of every caregiver.  It consumes, it steals sleep, it usurps joy, and in effect, can bring a caregiver to his or her knees.  It’s not just about holidays, guilt is the cloud that looms over living arrangements, medical decisions, financial decisions,  vacations,  family celebrations,  relationships and so on and so on and so on.  It becomes a constant struggle.  And no matter that every book on caregiving and every professional who works with caregivers says “Do the best you can – then let go of guilt.”  I ought to know, I have given that piece of advice to hundreds of caregivers.   But it is so much easier said than done.

The American writer and philosopher Elbert Hubbard said, “It does not take much strength to do things, but it requires a great deal of strength to decide what to do.”

I don’t have any sage advice for you Sandwiches this Christmas.  I am struggling like so many of you.  What I can do is once again say that you are not alone.  I am right here with you, climbing the mountain, fighting the big “G” of guilt and daily trying to decide what to do about some aspect of my mother’s care and well-being.

I can also pray and wish for you less guilt and more joy this holiday.  For me this season is a reminder of the promise of a better place, a better life – one where we will ultimately be free of pain and guilt and where our loved ones will be healthy and whole.   But no matter what your personal or spiritual belief, as we move toward the end of 2014, I wish you strength.  Feel a hug from me.  And eat some chocolate.