Tag Archives: dementia

Memories…and Grief

In her book Blue Nights, author Joan Didion says that memories are not comforting. She expresses her resentment concerning comments from well-meaning friends who say they hope her memories bring her comfort.  She says no – they do not. They simply remind her of what she no longer has.    Of course, she is writing this as she grieves her daughter’s death.  And in that context, she is correct.,

I, too, am grieving. So, I recently read Didion’s book The Year of Magical Thinking, written about the year after her husband’s sudden death. Then I dove in to Blue Nights.  Next, I will most likely revisit C. S. Lewis’s, A Grief Observed. That’s one of the things one does when grieving – you read about grieving. And those things written about grieving are often written by those who are grieving.

Back to the subject of memories.  Memories are important to me.  I was the recipient of many family heirlooms over the years which hold special memories for me.  I feel blessed to have had a large family including wonderful grandparents and many aunts and uncles with whom I was close.   My special possessions include:  Aunt Maxine’s uncomfortable arm chair; Granny Thomas’s sofa which I have had recovered three times (and the last time it had to practically be rebuilt – but I spent the money to rebuild it because it was so sentimental to me); Uncle Carl and Aunt Dorothy’s photo albums and WWII memorabilia (they had no children.);a quilt from my Aunt Bea; the dresser that was my father’s when he was young man; and my sweatshirt  and hat from Girl’s State my junior year in high school.   And, of course, I have boxes of my children’s photos under the guest room bed; their preschool drawings carefully folded in a large manila envelope; baby clothes wrapped in tissue paper and stored in a trunk – you get my point.  In addition, for more than a decade, I worked for the Alzheimer’s Association and my work revolved around the premise that memories are precious and the loss of memories a tragedy.

Nevertheless, I understand Joan’s point. You see in these weeks after my mother’s death I find myself waking at 3:00 a.m. thinking of that last week of her life. I go over every detail of the week and the days just after.  I recall the phone call informing me of the incident that began the final trajectory of her life.  I remember the recognition in her eyes when I told her she was very ill and we were not going to be able to make her better.  I go over the last few days when she did not awaken and we sat by her side listening to her breathing and wondering when she would breathe her last. And I recall the service: who attended; who did not; the flowers; leaving her for the last time.  And part of me wants to NOT recall those details – at least not every single morning at 3:00 a.m.

I find myself recalling a particular Christmas sometime in the late 80’s and a quick conversation with my mother.  I remember it was just past noon and I was playing with our recent purchase, a video camera.  I was filming the beautifully set holiday dining table and the kids playing with their new toys. My mother was in my kitchen assisting with preparations for Christmas dinner. She reminded me it was about time to mash the potatoes and I tersely commented that the potatoes could wait!  And I feel sad and ashamed that I answered my mother in such a hateful manner.  I haven’t reviewed the video- I didn’t dig it out of the box it is stored in and play it again.  The memory simply popped in to my head the other day  – a video in my mind – along with my profound regret at having spoken to her in such a way, over a simple comment about mashing potatoes.

After I go over the last days of her life at 3:00 a.m., I move on to the last few years.  I recall moving Mother from her home to assisted living.  I recall my agony even though my siblings and I discussed the options at great length and realized it was the correct decision. I also recall how much my mother missed that home and her church and her neighbors.  I recall every illness, every fall, each trip to the E.R., and every hospital stay.  I recall every milestone that marked her increasing frailty.

I have to dig deep and really force myself to recall the good times. Memories like Mother’s first trip to New York City with my sister and me.  I recall her delight in buying a hot dog on the street, her excitement when she purchased a Christmas sweater at Saks Fifth Avenue, the expression on her face as she watched a Broadway musical.   I remember her joy at having special alone time with her grandchildren when she kept them while we were out of town. She loved telling of their exploits while Grandma was in charge.

The mind is a strange and wondrous thing – but it is a muddled mess when one is grieving.  Didion says when a parent dies something deep inside us is dislodged. She also says it is normal to feel raw, fragile and unstable.

In these weeks since my mother’s death, so many things are difficult. I have a hard time in social situations – I have to force cheerfulness and conversation.   Sleep is difficult – I wake frequently and have strange dreams.   Chores are looming and I can’t seem to summon the energy to get them done.  Thus, it seems logical that it would also be difficult to recall the good times, and to focus on the happy memories, during this raw, fragile and slightly unstable time.  I so hope Joan found comfort in her memories as time passed.  I, for one, am glad I have them, like a gift, waiting to open them when the time is right, when my emotions are not so tender, when my heart is not so sore.

 

How Do You Let Go?

Some decisions are easy – Dad broke his shoulder and the orthopedic surgeon explains that he cannot fix the break – so you help Dad heal and accept that his shoulder  will not function as it did before.    Mom cannot swallow.  You know all the downsides to a feeding tube, so if asked the answer is no. Other situations are not so clear.

Laura said to me, “I feel like I am contemplating killing my father.” No, she did not mean she was considering shooting him, or giving him an overdose of medication, or pushing him in his wheelchair over a cliff.

“We urge him to eat when he really wants to refuse.  We push him to drink when he would really rather not.  We go to extraordinary measures to try to get his bowels to move.  But his body doesn’t want to do any of that. How long do we keep trying to force Dad and his body to do what they don’t want to do any longer?”

Dr. Atul Guwande in his book Being Mortal, points out something interesting and, obvious, once you think about it.  It seems that we have come so far with medical care and interventions that there is rarely nothing more we can do.  It used to be that illness usually struck with very little warning and then you survived it or you did not.  Now with all the interventions and treatments, how can we  be sure about when to stop?   Sometimes it is quite clear. However, in many situations it is not so clear.  And there lay Laura’s quandary.

Often, I believe the caregiver has such a difficult time letting go because we are reacting to or trying to prevent guilt.  Our pesky emotions or our fear of certain emotions muddy the waters.  We worry that we will feel guilty that we gave up too soon.  We worry that later we will regret not trying harder or continuing longer.  We worry that we are not sure what Mom or Dad wants especially when whatever illness or condition they have limits their ability to tell us out right.  Living wills and the Post, Polst, or Molst  form can give us some guidance.  Those written directives can clearly state, “I never want a feeding tube.”   But who puts on such a form “Don’t try to make my bowels move when they don’t want to move.”?

In fact, guilt permeates the letting go process.  You see, if you have been a caregiver for a while, you have experienced your moments of frustration, of being sick and tired of it all. You have had the thought “Isn’t it time for you to die?” or “How much longer is this going to go on?” or some version of such.  You are not mean, or cruel, or uncaring, you are simply tired.  This kind of on- going emotional stress causes what we call “burnout” in the corporate world.  In the medical world the term “compassion fatigue” is sometimes used.  Now, as you contemplate that this might really be the end, you recall those thoughts and you feel guilty. Maybe so guilty you are unable to make the decisions you need to make.

So back to the original question, how do we know when it is time to let go?  How do we then do so? If you have involved a palliative care or hospice team they can be most helpful.    I strongly urge families to involve a palliative care team or hospice care sooner rather than later.  NO, that does not mean your loved one is going to die soon.  It does not mean you stop doing for your loved one.  It does not mean you don’t provide some treatment.  It does mean that you have some experts  to add to your team who can  guide and assist you if your loved one has a life threatening illness.  I found that just as I was asking myself if it was time to stop forcing things, the hospice team began that conversation with me. I also think that if you are asking yourself this question, this is an indication that it is time.

Guwande suggests that at this time, we should look at not only our fears and hopes, but the fears and hopes of the person for whom we care.  What are those greatest fears:  fear of pain; fear of guilt; fear of loneliness; the fear of making a wrong decision; the fear of prolonging suffering?  And what are the hopes – the hope for quality of life, the hope for no pain, the hope for time to do one more thing; the hope to go in peace?

I believe it comes down to the question of quality of life and what specifically our efforts are accomplishing.  Are our efforts inflicting undue distress, embarrassment, and suffering? Are we prolonging discomfort , loss of control,  and unhappiness? Are our efforts allowing autonomy, providing comfort and relief from pain or distress?

A few years ago I heard a speaker on end of life issues use the term A.N.D.  It stands for “allow natural death”  And it made such perfect sense.   Our power has limits. At some point we need to stop fighting what is going to happen anyway – no matter how valiantly we try to keep it at bay.

I believe that knowing we are not alone can make the way a bit easier and the decisions clearer. I am a person of faith. I believe if we ask Him, God will help us discern when to begin the letting go. I also believe He will help us through it. It will not be easy, but there is never a promise of easy.  I realize not everyone believes as I.   So believe in yourself and the love you have for the person for whom you care.  Ask those in your close circle what they are seeing and if the think it may be time to begin letting go.  Most importantly listen to person you love and for whom you are caring. Listen to them closely and carefully.  They may tell you it is time to let go if you will stop fighting long enough to hear them.  Recently, my mother, in a moment of complete clarity, looked me straight in the eye and said, “I wish you all would just leave me alone.”

As a caregiver, you have given time and energy to providing the best care you can for someone you love.  You may have spent years trying to make things better, diminish pain and keep them safe.  It will be a challenge to do less.   But as is often said, sometimes less is more.   I read somewhere that letting go is not about caring for but caring about.  So how do you let go? With love.

I wish you strength and wisdom as you move through thesefinal challenges of caregiving.

This day

My heart is heavy.  I am unspeakably sad.

There has been no “event” that touched me directly.  There have been storms and rain, and floods.  Some have lost so much, but I have not.  Yet, I am sad – for them.

The world is a place of hate and turmoil now. Senseless killings, by evil people – some not so evil but simply ignorant – but killings, nonetheless. And I am sad.

There is little decorum now.  Mores, rules, traditions seem to be lost.  Casual and careless, are the norm.  Children are disrespectful, demanding, preoccupied with devices, not busy with imagination.  Innocence and purity are rare. We know too much, yet we know so little.  Private matters are not private.  It makes me sad.

Leaders do not lead.  So many do not stand for what is noble or  honorable – so many are crude, blustering, bullying, dishonest, and hateful- equally on one side or the other.  It makes me sad.

I watch as women I love slowly, slowly fade. I see friendships separated by miles and infirmity.  So many are ravaged by age and a disease that robs them of memories – of themselves.   I watch as millions of dollars are flashed at one who can throw a ball.  Yet this disease could be cured wtih more funding.  I watch as someone who was once strong and alive, struggles to be herself, but the body and mind become stiff and twisted and blurry – so that who she really is, or was, seems so often to be out of reach.   It makes me sad.

I struggle with the loss of strong, loving, people who gave my life color and history and a sense of being part of something solid and good.  I struggle with missing someone who left me quickly.  I wrestle with guilt at thinking there would be more time so I lost precious time and sharing.   I fight the guilt that I should reach out to others who loved him but I lose that fight. I cannot face them yet. I have no comfort to give them right now.   It makes me sad.

I am blessed.  I still have others to love and who love me.  I have young lives and warm wiggly bodies to hug, to watch in their childish glees as they experience the joy of ponies and dump trucks and ice cream.  I should look forward with light, not wallow in dark.

And I will try.  I will pray.  I will push on.  But, this day, I am unspeakably sad.

Compassion, Control, Autonomy, Respect

The question before us was “Are we caring with compassion or control?”   I was sitting in a session at a recent geriatric conference in the north east.  The speaker threw out this question…and I must admit, in all my years of being involved with, concerned about and responsible for providing care to someone “chronologically superior” (Yep, another new term since “old, aging, senior, and elderly” are the latest terms to become politically incorrect.)  I had never thought of it in quite that way.

At times, I have been involved in the process of establishing or changing state regulations concerning long term care, particularly those with a dementia.  I have participated in, created, and presented training for both family caregivers and those who work in long term care. Always, I have espoused the “person centered philosophy”.  I have advocated for seeing beyond the disease or the infirmity to see the true person before us, needing our care.  But this is a new wrinkle – a slightly nuanced way of looking at how we provide care.

Imagine the gentleman who has eaten a “sunny side up” egg each morning of his 82 years. He now finds himself residing in a long term care facility.  And suddenly he can no longer have his eggs prepared as he prefers.  It has something to do with health regulations about contracting food borne illness, and I get that – but still – imagine his chagrin that first morning in his new “home”.  Or the lady who has had a “toddy” each evening before dinner since she was old enough to imbibe.  But in her new home, that is not allowed.   She can have iced tea, coffee, fruit juice, but no “toddy”.

The speaker pointed out we usually lead with safety. But must we?  Or more importantly, should we? And then what about autonomy?  Can we have both?  Now most seniors (forgive me, but it’s shorter than the phrase “chronologically superior” and I am a lazy writer so I will use “senior”  from here on out, but with the utmost respect.) will tell you adamantly, they do NOT want to give up their independence.  But is that really what they mean?  You see none of us are truly independent. We don’t cut our own lumber and then nail our house together. We don’t build our own car, nor drill for the oil we have someone else put in it for us. We don’t grow all our own food, we don’t weave the cloth and make our own clothes.  What we have and what seniors want is really autonomy.

Autonomy is defined as the quality of being self -governing or self-directing.  And that inherently means we have the right to make some bad decisions – stupid decisions- decisions that result is some sort of harm to ourselves.  If we decide to eat nothing but donuts and cookies, we will end up with some results that may not be “good” for us.  When my college-aged daughter chose NOT to put oil in her car, she soon experienced the ramifications of that choice – a dead car!  But most of the time, we do make fairly considered decisions as we “self-direct”.  They have ramifications but not so serious or final.  I prefer bright colors, not beige and earth tones. I love my bright wall paper and colorful décor.  I did my research and chose my quartz kitchen counter tops, over the ever popular granite.  But when I put my house up for sale, this could impact how soon it will sell or regrettably, the price I receive.  But right now it makes me happy!

As we age, unfortunately, there are some things that may impact or threaten our autonomy.  It takes us longer to recover from illness or injury.  We may experience some slowing down of our physical abilities – we may lose a bit of balance, or our joints creak and take longer to loosen up in the morning. And yes, sometimes it takes our brain – our internal computer- longer to boot up!  And depending on our general health and our genetics, some of us may experience more illness or physical challenges than others.  Some find themselves facing serious acute or chronic illness or conditions – such as arthritis,  Parkinson’s disease, cancer or Alzheimer’s or a related dementia.

So how do we find the balance as we provide care for those who are experiencing challenges that impact where and how they continue to live?   And if we must err on the side of safety,  shouldn’t it be equally important  to show them respect and maintain their dignity?

One of the things I have observed over the years is that those aging individuals -no matter their physical or even cognitive challenges -who have a reason to be , who continue to have a purpose, seem to do better, live longer, manage the challenges facing them a bit better.   Researchers in happiness have discovered this as well. In the book, “100 Secrets to Happy Life” by author David Niven, he states that numerous scientific surveys indicated the number one factor in determining happiness was that a person’s life had purpose and meaning.

Yet, what meaning can we help our “seniors” find – particularly those who reside in long term care, when they are often relegated to simply sitting in a wheelchair being treated like children? How do we provide autonomy, purpose, meaning and dignity to those who are losing ability?

I have announced to my children that when I can no longer “wipe myself” when I go to the bathroom, that is when I want to be “taken out.”  I say it with a wry sense of humor – but frankly, I mean it.   I have watched my mother endure strangers doing such intimate care for her, and I have had to become used to doing such care for her over the past few years.  In the beginning, it was embarrassing for both of us.  Once, I even had to give her an enema, as the assisted living staff “didn’t do that”. But her doctor said she needed it, (Just so you know, they don’t do that in the ER either. We went there when my mother complained of severe abdominal pain. The ER physician literally said “She’s full of poop and needs an enema.  But we don’t do that in the ER.”)  So, what choice did I have? So, I did it. I gagged, but I did it. And now, stuff like that is no big deal.  But occasionally when I am providing intimate “bathroom care” for my mother, she will say with exasperation “For heaven’s sake, I can’t believe this.” And I know she is disturbed that it has come to this.  So, I always tell her I am sorry if this care is embarrassing for her. But that it’s ok. I love her and she needs my help so not to worry.  I figure, if nothing else, an apology might make her feel better.

A few weeks ago, there was a disagreement with one of the nurses at the nursing home where my mother resides and one of the Certified Nursing Assistants.  The C.N.A. had actually read the note I had placed on my mother’s wall. My mom isn’t at her best early in the morning.  Her meds usually don’t kick in for a couple of hours after that 6:30 a.m. dose.  She is often stiff, confused and obstinate at that time.  It seems that most often, she does much better at 8:30 when her meds have taken effect and her private caregivers, who she knows and trusts, come  to get her day started. This is written on a note on her wall. I have several notes on her wall. I learned early on that no one reads “the chart” carefully and with many staff changes, this was a way to relay information about my mother’s care and preferences.   This particular nurse,  who clearly had not read the note on the wall, was upset that the C.N.A, based on Mother’s reaction and resistance that morning, decided  to let her sleep a bit longer.  When I arrived later in the morning the nurse told me of the incident and said “I told him that she has Altheimer’s and she can’t decide when she gets up”.

I was able, with great restraint to keep from saying all that I really wanted to say. But my blood pressure surely was off the charts after hearing that stupid statement. Yes, I said stupid.  Because it was stupid, and disrespectful and not at ALL part of the person centered care philosophy that has been allegedly taught to long term care staff for years.  I wanted to say, “First of all, you are a medical professional. You have presumably had considerable education and training, thus you should KNOW HOW TO PRONOUNCE THE WORD!  THERE IS NO “T” in Alzheimer’s.”   But no, I didn’t say that.  I also did NOT point out that even a person with Alzheimer’s can and should be allowed to make some decisions about their life and care!  But I did point out the note on the wall (that had been there a good six months. Obviously,  she pays attention to detail) and I did  explain that my mother’s cognitive condition was still fairly good, even with her diagnosis and that yes, she most certainly could wait until her private caregivers arrive to get up and dressed.   But once again, that issue of autonomy, dignity and choice was before me.

I certainly don’t have all the answers.  It is not a simple issue.  How far do we take this? Do we allow the individual who falls frequently, to simply get up at will and risk the consequences of bumps, bruises and broken bones?  Our family has struggled with this as Mother has terrible balance caused by her Parkinson’s and has had several falls and broken bones.   I was chastised by someone who works in food service about the “sunny side up” egg controversy.  She assured me I would NOT want food borne illness to run rampant through the long term care facility.  I know a nursing home administrator who has arranged a “physician’s order” for a cocktail for some of his residents.    Not all, but for those for whom it would do no harm.  And, of course,  we can’t let the individual who can no longer safely drive, continue to get behind the wheel.   I have seen families wait way too long to deal with this challenge – sometimes with tragic consequences.  But is there a way we can have the conversation sooner rather than later and offer some alternatives that still allow some autonomy?

It’s certainly a vast and complicated question. I do not claim to have all the answers. It does pose a dilemma.  If nothing else, I suppose. just bringing it up, may stir some conversation that could make a difference.  I realize that some decisions about care, safety and control are easier than others.  One expert I listened to recently, suggested that we ALL make a “when I can no longer drive” plan, just like we make any other retirement plans.  That way, we have a say in the matter. And it helps our children or loved ones with viable options when that time may come.  I also know that dementia, the losing of cognitive ability, complicates the issue greatly.  But does common sense have something to offer? Can we, if nothing else, NOT paint everyone and every situation with a wide swath of “disability and indignity”?

Yesterday, someone from the activities department at the nursing home brought my mother a baby doll.  She had heard Mother had Alzheimer’s and that Mother loved looking at the numerous photos placed around her room of her every young great-grandchildren.  I know there are many women with Alzheimer’s who are comforted by having a baby doll.  They have moved back in time, in their minds, to when they had been mothers (Ah, there is that purpose and meaning thing again), so they do find comfort in holding or tending to a baby doll. I have seen it be quite effective.   But shouldn’t one do a bit of research? Maybe have a conversation with the person or observe her behavior before making such a gesture? Common sense tells me yes. That would be the respectful thing to do.

Apparently even my mother thinks so. She loves seeing those photos of her babies. And she loves holding them and interacting with them when they visit her.  When presented with the baby doll yesterday. however, she articulately said “Get that thing out of here.” So there.

 

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.

 

 

 

 

 

 

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.

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.