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.

 

I Wondered

I wondered what it would be like.  Would I be enormously relieved?  Would I be sad? Would I cry? Would I feel guilty, worry that I hadn’t done enough or could have done better?  Would I wonder what I was supposed to do next after so many years of focusing on her well-being? Would I continue to automatically turn my car toward her nursing home?  Would I, without thinking, look for her favorite but hard to find cookies in the grocery aisle? Would I still wake up at 3:00 a.m. to worry about her or her latest illness, or challenge? Would I feel grief?

The answer is yes – to all the above.

I have written about grief before.  My brother passed away suddenly and way too soon.  Grief can hit you like a hurricane.  Or it may grab you by the ankles at unexpected times and in subtle ways.  My brother’s death set me reeling and I am still not quite on steady ground with his leaving.  But many times as I watched my mother endure her slow decline, I wondered if it was time.  I wondered how much longer I would have to watch, to worry, to be so incredibly tired.   I was on an emotional see-saw wanting her suffering to be over while wanting to help her still find joy and experience some sense of purpose.  I felt tremendous guilt at having some of those thoughts and feelings.

Those of us who are caregivers have been grieving for a long while.  We have been grieving all along the journey. And we worry – that we are not doing enough or doing it good enough. Sometimes we are sick and tired of caregiving.  So, I suppose it is normal to wonder if we will also grieve when that journey is over.

I felt grief when I had to take over her checkbook.  The woman who had been a whiz at bookkeeping, balanced her checkbook to the last penny, and shamed me for not doing so, now put the stamps on after I wrote the checks for her bills.

I felt grief when the woman who was known for her fashion sense put on earrings that didn’t match her outfit.

I felt grief when she longed for her house and asked me to take her back there.

I felt grief when the tall woman with the rim rod straight posture became stooped and twisted.

I felt grief that last Sunday when I looked in to her clear blue eyes and said, “Mama, you are pretty sick and we are not going to be able to make you better.”

Sometimes we were Frick and Frack, sometimes yin and yang, Lucy and Ethel, and sometimes we were oil and water.  She could drive me up the wall.  I often did not meet her expectations.  Sometimes she was my pal.  Sometimes she was my sounding board, my benefactor, my counselor and advisor, my shopping companion and recipe sharer.  Sometimes she took care of me.

The world wants me back. Meetings occur, events happen. I see folks out and about who say, “Hey, how are you?” and they expect the standard “I’m fine.” answer. I am not accusing or blaming – it’s just the way it is.  It’s been a month.  The night after my mother died there was a lovely harvest moon. As my sister and I gazed up at it that night, I commented that Mom was in Heaven, shining down on us.  This weekend was the next full moon.  As I gazed at it alone, I sent her a little wave and a wink.

I miss my mother.

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.

Boundaries

The tension rolled off Sherry in waves as she entered the room.  The whole atmosphere changed as she walked in.

I was assisting in facilitating a “Careversation” for an organization with which I volunteer.  These are hour and a half meetings to share basic information, suggestions, and resources with caregivers.  The information shared is fairly generic and I was on hand to offer some more detailed specifics and guidance should it be needed. I asked Sherry what brought her to our gathering.

“My mother lives in an assisted living and…” and she was off.  The words tumbled out in breathless succession, very staccato, almost like bullets.  It was as though she had been holding them in for quite a while.

After a bit, I put my hand on her knee and said, “It’s ok, we have plenty of time. Take a breath and relax a little.   Would you like something to drink?”  I got her a cold drink before we continued.

Sherry was in her mid-fifties.  She shared that her mother was 86 and had a condition that now rendered her wheel chair bound.  Cognitively, it sounded like her mother was fine.  But it was evident she was extremely demanding.

“I had a very special bond with my father”, she said. “ We were best buddies.  We just had this incredible rapport.  It was wonderful.  And I promised him as he was dying, that I would take care of Mother.”  And she launched into a frantic historical account of all that had happened with her mom and all with which she was dealing.

The details were kind of fascinating to me. I was amazed at all that Mom had demanded over the years. Everything from “Two weeks after Daddy died, Mother told me to find her a realtor and start packing up the house,  she wanted to move” to “I am out of Tylenol and need you to get some for me right now.”   Apparently, those tasks were never presented as a request but always as a directive.  I have to admit, I thought  Mom sounded like spoiled brat

Over the last ten years since her father’s death, her mother’s physical health had changed and ultimately Mom needed to move to assisted living. “She complains every single day that I did not move her in to Pecan Hill Place but she cannot afford Pecan Hill Place plus their rules about residents in wheelchairs really would not work for Mother,” Sherry told me. “Plus, Raintree, where Mother is living, is ten minutes from my house. Pecan Hill Place is at least a thirty minute drive for me”

Now, Pecan Hill Place is considered the most prestigious assisted living in the area, but I knew from personal experience that while it is beautifully decorated, the care is no better than Raintree, in which Sherry had placed her Mom.  In fact, Raintree is a newer facility and is also beautifully decorated.  If décor and atmosphere were the measure, I would say it is entirely equal to Pecan Hill Place.  But clearly, as Sherry had shared, there were other factors that were and should have been considered in the decision of where her mom should live.  But apparently, prestige was most important to Mom.

And of course, all of the details did not really concern me. What I was concerned with was Sherry. Her hands fidgeted as she talked.  She was pale and she seemed utterly exhausted.

“My daughter and three grandchildren live two streets over from me. I would love to be more involved with the kids.  I can’t attend their sporting events often, or do much with them as Mom always needs something.  And my daughter was just diagnosed with a severe chronic illness and I am really worried about her.  And last night my husband said he was going to divorce me if I didn’t slow down and spend some time focusing on us.”  Sherry sat back in her chair with a sigh.

And here we have it folks – the issue of boundaries for caregivers.  Admittedly, Sherry’s situation is extreme.  Her mother sounds like a spoiled diva to me.   But nevertheless,  the issue is an important one, and is nearly always a challenge for caregivers.  We tend to develop this over-the -top sense of responsibility when we become caregivers.  We take on the task of not only physical care, but emotional care as well. We think we can do it all, including making that person happy.   Sometimes it is exacerbated by some promise we may have made, to the person for whom we care, (“I promise I will never put you in a nursing home, Mom, “) or to someone else as Sherry had to her dad.

Yes, I realize that our presence, or bringing Dad his favorite dessert, or taking Mom on an outing, can certainly contribute to the happiness of the person for whom we care.  But we, as the care-giver, simply cannot provide for all the needs of another person. It is not possible.  Yet, many of us try.  And it is usually to our own detriment.  Hence, all the statistics out there about caregiver health declining or even dying before the person for whom they care.     To me, it truly is about survival, OUR survival. And Sherry was the extreme example.

Don’t get me wrong, I, too, am guilty of that which I see in other caregivers.    I fret over every detail of Mom’s care.  I bring her favorite snacks.  I have decorated her room in her favorite colors.  I place her favorite photos so that they are in her line of vision.  I hire private caregivers to spend time with her during each day – to not only provide her with some conversation and social stimulation, but to assist with her care in the nursing home where she currently resides.  I feel guilty that she is in a nursing home, yet given her care needs, it is the best place for her to be.  I worry about her happiness, yet my Mother was always a somewhat negative person. She usually saw the glass as half empty. So why should I presume I could make her happy now?   I have a difficult time truly relaxing when I am away. On vacation, I worry constantly.  And here is the thing – my mother has a serious condition that has no cure.  She is and will continue to slowly decline. There is absolutely nothing I can do to stop it.  And at this point in her illness, sometimes I struggle with the guilt that the care we have given her is actually prolonging the inevitable.  Is it possible that we provide too much care?

That is probably a question for further thought and discussion. For now, however, it is important to talk about boundaries. We need them, and set them in other aspects of our lives. I think it is critical that we do so when it comes to our being caregivers.

Sherry told me that she was actually on her way out the door with her husband for a date night when her mom called about being out of Tylenol.  Sherry said her husband was furious that they “had” to take a detour to the drug store and then to the assisted living to deliver their purchase.  I suggested gently to Sherry that Tylenol wasn’t a life sustaining drug. And that more than likely, the assisted living would have it on hand.  I also advised Sherry to listen to her dad and what I called his “other voice”.

I said, “Sherry, I know you told your dad you would take care of your mom. But you also told me that you and your dad shared a special bond.  It sounds like he loved you very much. Do you think he would be pleased to see you so stressed and exhausted?  I think maybe Dad would want you to take care of yourself too.  Maybe you could imagine hearing his voice tell you that sometimes.  I think you were as important to him as your mom was.”

Sherry looked almost shocked.  “I never thought of that,” she said.

We have heard the analogy a thousand times, if  you are on the airplane and the oxygen masks drop, it is important that you put on yours first, before you help the child or someone else who is with you.  I roll my eyes each time I hear that analogy.  But I should not.  In fact, I think that setting boundaries is a lot like that oxygen mask. Setting boundaries will help you survive so that you continue your role as caregiver as long as you are needed.  Coach Frank Broyles, the winningest coach in college football, took care of his wife with Alzheimer’s.  He has written a guide for caregivers in cooperation with the Alzheimer’s Association called Coach Broyles  Playbook for Caregivers.  One of his key points is that in football, it is crucial to protect the quarterback – that person leading the team.

I can only hope Sherry will set boundaries.  I will continue to try.  I hope you will too.

Hang in there, Sandwiches. We have miles to go before we sleep.

 

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.