end of life

I Wish This Was Over! Uncensored truths about caregiving and prolonged dying

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After struggling to give her mother a bath for 45 minutes, Rene’s patience was spent. Her mother’s Alzheimer’s caused her to resist the bath, and Rene had to deflect her flailing arms and verbal assaults. With no time to take a bath herself for the last three days, she now sat down, exhausted and angry. Looking up with tears in her eyes, she whispered, “Why doesn’t she just die already?” She quickly censored her statement and declared, “What a horrid daughter I am to wish that!”

In progressive illness, the focus is necessarily on the care receiver. Yet the greatest suffering may be that of the caregiver, who can be emotionally, physically and even financially depleted. Perhaps you have put work or family life on hold to tend to an ailing family member. And after weeks and months, the strain is increasingly difficult to endure.

Quality of life issues impact both care receiver and caregiver. However, the needs of the ill person often take priority, while your own basic needs may go unmet. Over time, those unmet needs can create resentment. Yet when you imagine the scenes you see in movies that show endlessly loving and patient caregivers, you may feel a sense of guilt, selfishness and inadequacy.

Your neighbor talks about how honored she is to care for her husband 24/7. Is she telling the truth, you wonder, or is she also hiding behind a mask of hearts and flowers to hide her fatigue and frustration? Does she sometimes think, “I wish this was over?” You question reality. You want to slap her and find out.

Does this sound harsh or familiar?

Sometimes your suffering is compounded by the fact that your loved one has already had an existential death due to dementia. This is not the person you grew up with or married. There is no more meaningful conversation or shared laughter — no gratitude for the work you are doing. You are working for someone who may no longer recognize you, or who may even fight you as you attempt to provide care.

Prolonged caregiving of the dying can precipitate a troubling burden. You may entertain thoughts like, “I wish this was over!” and feel guilty for thinking them. Does this mean you do not love that person? Of course not. Does it make you a poor or heartless caregiver? No! It means you are human. You share these unspoken truths with many other caregivers. But because everyone censors their true feelings, you feel alone.

Give your suffering a voice and tell someone you can trust, someone who can understand and not judge you.

Attend a caregiver support group. Let off steam by exercising, journaling, painting or even breaking something you will not miss. If your loved one is in hospice, confide in the social worker. Talk about managing triggers and balancing your own needs with those of the person you are caring for. Talk with the chaplain to seek comfort, forgiveness and meaning. Use volunteer support or a respite stay on an inpatient unit so you can take time out.

Caregiving can be both an honor and a burden due to the many ups and downs. Forgive your loved one for “taking too long to die.” Forgive yourself for wishing it was over. Put down the mask and share your truths and find the support you deserve.

Initially posted in sevenponds.com blog, “Dying Well”.

For more end of life resources and blogs, go to http://pathwayseol.com

It’s the Only Thing I have Left for You – Guest Blog

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When the Best Medicine Isn’t Traditional Medicine – This is the story form a true healer and I’m grateful he allowed me to post this on my site.

It’s the only thing I have left for you

I was a brand new physician on call and he had fallen off a barstool about a week earlier. Eventually he had trouble breathing and the ambulance took him to the Emergency Room. A chest x-ray, then a CT scan showed he had bled into the pleural space around his right lung and collapsed his lung almost completely. He had two broken ribs and was short of breath and I could see every breath was painful for him. He winced when I examined the bruised area below his right armpit and he stopped his breath short when I put my stethoscope in the area of his broken ribs.

He didn’t complain and, in fact, he never complained. He had to be taken to surgery for a decortication of his right lung, which meant the surgeon had to make a large incision between his ribs to go in and scoop out and peel off the clotted blood that was stuck to his lung. He had lost almost half his blood volume and needed transfusions before he went in to surgery. After surgery he had to have a tube going into his chest to pull the air and blood out continuously so his lung could gradually inflate itself again. He was on a ventilator for a few days and the tube was in for almost a week before the drainage decreased enough to pull it out.

He was polite every morning when I went in to round on him and he smiled at me every time, even when I could clearly see he was in pain. Once the breathing tube came out, he was able to talk, but he never volunteered any information and his answers were brief. He would never call the nurse to ask for pain medicines because he didn’t want to bother her and said he knew she was busy. He always thanked me for coming in.

He recovered from that completely and his collapsed lung just became a part of his history. We grew to really like each other and I was always happy to see him on my schedule. He had some abdominal pain at a visit several years later. I ordered x-rays and they showed pieces of shrapnel from a war injury in Korea. He had never volunteered that information and on further questioning, he also had shrapnel in his left knee. The shrapnel wasn’t the reason for his pain and it never really bothered him and he declined to have it removed. I made a notation in his chart that he was a war hero and needed to be treated with respect and for the most part the Emergency Room doctors honored that.

He continued to drink and off and on would end up in the hospital because of it. During his binges, he stopped taking his diabetes and high blood pressure medicines and eventually he was admitted to the hospital with a heart attack. This damaged the left side of his heart and made him prone to getting congestive heart failure, or fluid in his lungs. He didn’t come in for visits very often and most of the time I saw him was when he was hospitalized for something.

His diabetes continued to worsen and I could never convince him to take his insulin regularly. Consequently he suffered a stroke that made his right side weaker and that caused him to fall several times. He walked differently than he used to and he ended up with a blister on his right foot. That went on to become a sore that just never healed and he finally ended up with osteomyelitis, or an infection in one of the bones in his foot. This is very difficult to treat with antibiotics and he eventually had an amputation below his knee. He was never able to get the hang of a prosthetic leg and spent most of his time in a wheelchair.

His amputation made it impossible for him to live on his own and he was in a nursing home for about a year, then a group home. He always said the food was fine, the staff treated him well and he denied any pain. The staff brought him in for regular visits and his blood sugars and his high blood pressure finally came back into control.

I tried a few different ways to ask him about his war injuries and he always changed the subject. One time his eyes got moist when I asked him about Korea and his injuries.

“I couldn’t save him.”

“Who?”

“It doesn’t matter. It was a long time ago.” He changed the subject and he would never talk about it again.

His circulation was so bad that his left foot turned dark and he didn’t tell the staff members about it until his foot was cold. I saw him in the clinic and directly admitted him to the hospital. It was too late to save his foot and he had an amputation of his left leg just below the knee.

He came in a few times for urinary tract infections and he came in for regular visits, but years of uncontrolled diabetes had already done irreparable damage. His eyesight was failing and cataract surgery only helped a little. He was hoping laser treatments to his eyes would bring back some of his vision, but the treatments were to try to prevent further damage.

He went into renal failure and I had to stop one of his heart medicines as his kidney function was worsening. I referred him to a kidney specialist, but he didn’t understand anything that was said to him when I asked him about that visit.

“You’re my doctor. I’ll trust you to know what to do.”

He had episodes of congestive heart failure off and on and he usually recovered with a few days in the hospital on intravenous medicines to get his kidneys to get rid of the fluid buildup.

He was admitted for a similar episode and this time his x-rays showed a pneumonia filling his right lung. His temperature was high and his labs showed he was fighting an infection. He was agitated and moaning and needed to be sedated. He pulled his IV out and kept trying to get out of bed. His niece was his only relative and he had signed forms giving her permission to make decisions for him if he became incapacitated. He made it clear he did not want to be on a ventilator again.

Two days of IV antibiotics made no difference and his pneumonia was getting worse on repeated daily chest x-rays. His lung sounds were coarse and wet. I gave him a diuretic to try to pull some fluid off his lungs and it dropped his blood pressure too much to repeat it. He would intermittently answer questions, but mostly was restless and not responsive.

His niece finally asked if we could just make him comfortable, as he just wasn’t getting better and at 86 years old, didn’t have any reserve left. We stopped his antibiotics and I stopped all medicines except those for pain and agitation.

The next morning I went in and he was still restless and not responding to his nurse. His lungs sounded worse and his breathing was labored. I discussed plans with his nurse and she left the room and it was just he and I. I pulled a chair up and moved closer to his ear so I could talk to him quietly.

“It’s Dr. Vainio. I remember what you told me a long time ago. There’s no way you could have saved him. No one could and it’s not your fault. You did your best and he knows it and he always knew it.

I have something for you and for him. It’s the only Ojibwe song I know and it was given to me to sing in the American Cemetery in Luxembourg. I sang it there for my wife’s great uncle Johnny Mercer and everyone who died on that B-17 bomber and for every warrior there. It’s a Soldier Song and I want to sing it for you now.

It’s the only thing I have left for you.”

I didn’t have a drum, so I held his hand and I tapped out the drumbeat on the back of his hand with my other hand and I started to sing.

I was uncertain at first, but about halfway through the song, he began to relax and my singing became stronger. His grimace softened and he started to breathe easier and he stopped his constant restless moving. His hand had been simply resting in mine and he began to hold my hand and he held it until the song was done. He didn’t open his eyes and he didn’t say anything. After a minute or so his hand stopped squeezing mine. I held it for a little bit longer and I put it back on his chest.

His niece was with him and she called me after he died later that morning. “He was really calm, Dr. Vainio, and he died peacefully. What did you finally give him that made such a difference?”

“He was a soldier. I just gave him permission to die with honor.

It was the only thing I had left for him.”

posted with permission of Dr Vaino, originally posted In Indian Country
Arne Vainio, M.D. is an enrolled member of the Mille Lacs Band of Ojibwe and is a family practice physician on the Fond du Lac reservation in Cloquet, Minnesota. He can be contacted at a-vainio@hotmail.com.

The Need to Touch

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Walking by a hospice room,  I noticed an elderly woman, reaching through the side rails of the bed in which her husband of 62 years was dying.  She was understandably in pain as she stroked his hand and spoke softly, tho he was already in his final coma.

I instinctively walked in and asked her is she needed to climb onto bed and hold her husband – spoon him – one last time.  Her face lit up as she exclaimed, “Oh, yes!”

These were his final hours of life, their final hours as a couple.

This last memory is important, and with this ‘permission’,

she was able to hold the love of her life as he died,

and he was embraced by her love as he died.

What could be better?  A bittersweet but important memory.

We often forget how important touch is, how important it is to hold our loved ones near the end.  Sometimes it’s fear of hurting that person or a fear that embracing may be considered inappropriate at this time.   In healthcare we need to actively  normalize it, encourage it if comfortable for both parties.    It’s calming and can provide a sense of ultimate peace.

It is is a more common practice to encourage parents to hold their dying baby.

But I have to say, that if it’s my 63 year old son who is dying,

that’s still my baby.

I need to hold him.  I want to be supported by staff to make it possible to hold him as long as he is comfortable with that.  Move the pillows, arrange any tubes.   This intimate and sacred time will never be repeated.

Encourage touching, holding, talking. In the end, for both people,

this may be the most healing activity we can render.

Lost and Found: Journey of the Spirit in Dementia.

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Families facing the end-stage dementia of a loved one actually experience 2 deaths; first the existential death of the person they knew, due to changes in personality, do the things that defined their lives, or the eventual inability to recognize their loved ones. The second death is the physical one, often due to pneumonia or infection after years of gradual decline.

Working with the terminally ill for most of my 40 years as a nurse, I deemed end-stage dementia a difficult and prolonged illness that can mean years of stress for family caregivers. It never ceased to amaze me when I witnessed their commitment to care despite their exhaustion. What often sustained them was the memory of that person and the role he or she played when in full health.   The loss of that companionship and meaningful sharing can be devastating. These losses may be accompanied by changes in personality as filters are removed. A person who had been meticulous in their grooming or style now prefers to not bathe and does not care who sees them naked. This can be a shocking and unnerving transformation for the family as they do not recognize this new person. These are a few of the many losses and mini deaths before the final physical death.

Watching my own mother slowly progress in her dementia, another aspect, almost a rebirth, has been revealing itself.

My mother was the first to say, “If I ever get Alzheimer’s, just take me out and shoot me!” The fear of lack of control and losing oneself is shared by many , including me. But the downward slide into this insidious disease has also revealed a blessing, which came as a surprise to me.

No longer censuring her opinion, she freely reveals her thoughts, and my brothers and I are now collecting humorous mom-isms.

No longer worrying about her weight , she enjoys her desserts without apology.

No longer obsessed with her external image matching the preferences of her husband by wearing the right clothes or best jewelry, she now revels in her joy of putting on cheap plastic daisy earrings because, in her heart, she has always been a wildflower girl.

No longer fretting that I am unmarried, a status contrary to the beliefs of her day and the cause of great concern, her frequent frets of “Can’t you find a good man?” have been replaced with “How is that sweet dog of yours?”.  A four-legged male is now a sufficient source of love.

No longer worrying about the appearance of her home, she can sit for hours and enjoy watching animals scamper in the desert outside her window.

She has lost her tendency to judge and worry and replaced it by accepting and even embracing what is.

She is now complimentary of everyone and everything, appreciative of even the smallest gestures.

When the caregivers tell me how sweet she is and I quickly retort, ”This is not the mother I grew up with!”

Do I still need to hold onto that past?

This emerging way of being has resulted in my own barriers falling away, allowing for compassion, forgiveness, and love that I had not expected to feel.

We are both being transformed.

So now I reflect:

Nearing the end of her life, has she actually found the authentic life she had previously denied herself, unencumbered by external forces or the need to please?

I have lost the mother I knew, but gained a mother whose spirit is shining through with simple joy.

In letting go, losing her self,

has she finally found herself

or have I finally found her?

 

Letting go near the end of life is a unique and dynamic process.

What have you experienced?

 

Finding the Threads – Unraveling Grief

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Part 2 of the Legacy of my Father, June 10 blog

My 18th birthday

Five months to the day after my father’s suicide.

The unwanted gift of tears arrived without warning,

without my permission

bursting through my wrapping of protective armor

that had been slowly eroded, not strengthened,

by the process of denial and minimization.

 

I had thought I held my grief well, the right way,

strong and silent

hiding behind my invincible shield,

proudly displaying our family insignia of “Really, I’m fine.”

 

But on my 18th birthday, pretense fell away

I fell headlong into the void when no father was there catch me and  say ,

“Happy Birthday, pumpkin head”

Why was I crying?

It had been five months – shouldn’t I be over it by now?

I judged my tears and perceived this weakness harshly.

Everyone else seemed to be fine.

But in truth I never asked

for fear my truth might be revealed. I wasn’t fine.

I didn’t know they were also hiding behind their own shields.

 

I did not understand for many more years

that the ever unfolding journey of grief takes a lifetime.

 

I initially avoided it by working hard to achieve – to over-achieve, actually,

To ward off my new sense of feeling unworthy.

A truly worthy child would not have a parent leave under such horrific circumstances.

Unexpected deaths can leave behind

the unwanted accompaniments of increased vulnerability

and fear of more abandonment by the survivors.

I did not know these feelings set up home in my unconscious mind, becoming drivers in my world.

 

It took another 10 years to realize I was angry.

I was angry my father killed himself

I was angry I had to try and understand and be sympathetic of his choice.

I was angry I was left to live with his decision, not his presence.

I was angry at myself for not being brave enough to tell him I loved him before it was too late.

Wait – how can someone be angry at a dead person,

a person whose acute suffering led to a desperate act? Have I no heart?

More self-judgment

until I began to recognize there are the many faces and phases of grief.

 

As a nurse on the cancer ward,  I became the inadvertent student of the patients and families I served.  Mortality rates were high in those days and I was grateful they  acted as my teachers and guides for the journey of death and dying, grief and loss.

I saw those that expressed their grief with loud wails and flailing arms.

Externalized grief was foreign to me, and initially I wanted to run,

but I learned to stay and be present despite my discomfort.

I witnessed the judgments when family members expressed their grief differently,

whether by demonstrating avoidance, stoicism, beating their chests, or crying.

It was easier to share grief with those who had the same style of grieving.

Other styles were deemed maladaptive.

 

I saw the guilt and fear that accompanied grief.

And I saw the anger.

“I begged you not to smoke and now you are dying of lung cancer, deserting us!”

“You don’t love us enough to try harder to stay alive for us.”

”If your faith was stronger, you could have beat this”

I recognized that beneath the anger was simply grief and loss.

Lost opportunity. Lost presence. Lost future.

A compassionate and understanding heart was the only treatment for that pain.

 

In understanding and accepting these feelings in others, I began to understand and accept my own.

By removing my protective shield to embrace my history and vulnerability

I could be more fully present,

without judgment,

a healing presence for others

to help them face the fears and impending loss,

share love openly, prepare for closure,

and thoughtfully create the legacy they will leave behind.

Death is hard enough.

Things left unsaid or undone is harder

for both sender and receiver.

 

My work with others became a healing path for me.

The unwanted experience that was initially thrust upon me when I was 17,

was unwrapped and unravelled over time to reveal the gift hidden deep inside.

By taking the threads from my initial unraveling from my father’s suicide,

I could weave a tapestry for my own life, personally and professionally,

transforming the painful lesson into an opportunity to serve those who are facing the end of life.

 

For that, I am grateful.

Turning feelings into meaningful action

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Think about the people who mean the most to you.  Why are they so special?  What role have they played in your life?

Have you told them that?

If not, what are you waiting for?

The bitterest tears shed over graves are for words left unsaid and deeds left undone.  -Harriet Beecher Stow

Today is the day!   By sharing your heart verbally or thru a hand-written letter, you will make their day.

 

The new Pathways Blog

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Welcome to Pathwayseol.com. I am Tani Bahti. Nurse, speaker, author, producer of “The Straight Talk Series on End of Life Issues” and award-winning DVD, “Living through Dying – The Struggle for Grace”, and I have been totally committed to improving end of life care since 1976. My experiences have provided me the good fortune to … Read more