dying

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

Doing it Right – How the Experts Manage their Own Dying

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We were eight very experienced hospice workers, surrounding the bed of Kim, our beloved friend and former hospice co-worker, who was now close to death. One would think we were a dream care team, and yet, there we were, arguing about her care.

“She needs mouth care.”

“No, she will choke on any water from that swab!”

“We need to turn her every 2 hours to prevent bed sores!”

“No, she is so close to death it will be uncomfortable and disruptive.”

“She is moaning and needs pain meds.”

“No, she looks comfortable – she’s just communicating with us or those we can’t see.”

Although this was our area of expertise, we couldn’t agree on the best care. We shared an unspoken fear of letting our friend down, of not providing the care she deserved to assure the most comfortable and dignified death.

“Doing it right.” While based in a loving intention, it seemed to be a moving object I and my esteemed and experienced friends could not fully embrace at the same time, despite being the “professionals.” We now better understood what this must be like for the hundreds of patients and families we had served, confidently providing direction and reassurance with patience and compassion — qualities we were now lacking for each other!

Our ego is attached to this need to do this right. It makes us wonderfully, albeit painfully human.

Kim’s partner had been busy for months, coordinating treatments, support, healing ceremonies, care giving schedules, and providing the right foods, supplements and holistic care. She fought to maintain a positive outlook and push back any fears or negative thoughts that might impact either care or outcomes. She committed to being superhuman in her tireless efforts.

Finally sitting down in total exhaustion, she exclaimed, “I finally realized, I’m not going to get through this looking good!” What a freeing statement! We laughed and cried with this truth.

Let go of the “shoulds.” Simply watch the response of the person you are caring for and let that be your guide. What might be needed at noon may be different by 2 p.m. It’s OK.

Recognize that everyone is grieving, and everyone is frightened of not providing the best care.

The key is the love we put into every action.

I could imagine Kim’s spirit looking at us all, both grateful and amused.

There is no perfection. There is only love.

And that is perfect.

Holding On, Giving Up or Letting Go : Finding Closure on the Road to Good Bye

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We need you and can’t lose you now. You have to fight this so we can have more time. Don’t give up!

 

It may feel like person is choosing to die when they no longer want to fight. That can leave us with a sense of abandonment if we believe the person really has a choice. But in truth, there comes a time where we must all come to the natural end of life.   That knowing and acceptance often comes to the person long before the family.

Let’s face it. It will never be a good time for anyone we love to die. The desire to hold onto every minute, with the hope for more minutes and hours and days, is normal. The pain of loss is the price of love and we want to put off that pain as long as possible, but at what cost?

Ann was dying in the hospital. Her husband and two children knew she would never return home, and they remained by her side. After 3 days, I was surprised to see Ann was still clinging to life, but I understood when I overheard the whispered pleading of her young adult children.

They were grasping the hands of their barely conscious mother and kept repeating,

“You’re going to get better mom. We’ll get you out of here and when you are stronger, we’ll take that trip to Hawaii.”

 What Ann heard is that her children were not ready to let her go.  

So she stayed, just barely holding death at bay, despite her body working to shut down.

 I shared this interaction with the husband and he then took the children to another room to speak to them. They returned 10 minutes later, red-eyed but resolved.

They again sat by their mother and grasped her hands and this time tearfully whispered,

“We love you. We’re going to miss you.

But we’re going to be ok.”

Ann relaxed and died 10 minutes later.

Sometimes people need permission to leave. They may need to know that who they leave behind will be cared for, whether it’s a spouse with Alzheimer’s, their 20 cats, or even that their daughter who has yet to find a good man. Finding out and addressing their concerns is helpful in the letting go process.

There are times when the dying person knows how hard this is for the family, who is holding on, and may wait to die until they step out of the room or fall asleep at the bedside.

There are times when the family is ready and ‘releases’ their loved one by declaring:

“It’s ok to go now, Grandma”.  That’s ok.  Only need to say it once, though.  Now Grandma also needs to let go, as does her body.

You say feel it’s never ok to say that since it’s not ok that the person you love is dying.

That’s ok, too.  Good byes and closure can come in many forms.

Tell your favorite stories.  It affirms the life you shared while letting the person know how they will be remembered.

Holding on, letting go – a process to be recognized and gently honored for everyone involved.

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.

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