Tag Archives: dying

July 26, 2015 · 8:00 am

My essay about dying at home posted on The Caregiver Space

I’ve been reading posts on The Caregiver Space for quite some time, but never had time to submit my own writing.

Now that I find myself in a post-caregiving phase of my life, I’m really trying to focus on writing a series of essays that have been stewing in my brain for awhile.

hospital bed

Last week, The Caregiver Space published my essay, “Why dying at home is not all it’s cracked up to be” and the reception has been quite positive. The post was published on The Caregiver Space Facebook page where it generated several hundred likes and many heartfelt comments.

The essay is not an attack on hospice care workers; I admire most of them and think they do a phenomenal job. Hospice care is truly a calling in my opinion, and one can see the benefit of the loving, compassionate care they provide.

My essay is a look at dying at home vs. dying in a facility from the family caregiver’s perspective. After my dad died in a skilled nursing facility, I was all for my mother dying at home. But the reality was a bit different. It was an emotionally brutal experience that I wouldn’t wish on my worst enemy. That’s not to say that her death would have necessarily been better in a hospital, it would have been difficult in a different way.

My main point of the essay is to bring awareness to family caregivers in rural areas. They may find that the local home hospice agency is understaffed and overworked, and cannot provide the around-the-clock care that is often touted by die-at-home advocates. People should be aware and prepare themselves for taking on more of the nursing duties of caregiving. If they feel they cannot do it themselves, they should seek out help from family, friends or professional caregivers.

If you have the time, please read the essay and let me know what you think. Also, please share with anyone who you think could benefit from the information.

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May 31, 2015 · 1:47 pm

Grief, relief and regret

As anyone knows who has lost a loved one, your grief doesn’t always progress through the designated stages like it’s described in books. Many of these self-help manuals make it clear that there is no one correct path, but it’s still something you have to experience for yourself to understand.

To all of you who left lovely comments, thank you so much. It does help to know you are not alone.

The first few days after my mother’s death were fueled by an adrenaline rush, to power through and focus on completing the necessary tasks. My goal was to get home as soon as possible.

Mom was a jokester, and would want to be remembered with smiles and laughter, not tears.

Mom was a jokester, and would want to be remembered with smiles and laughter, not tears.

I returned home and took a few days off from work to get settled in and recharge my batteries. I spent a lot of time receiving “purr therapy” from the cats. I went on walks. I got a massage.

Then I returned to work and the fast pace of my daily duties left me little time for reflection.

So here I am, 10 days after my mom’s death, and more than grief or sadness, I’ve experienced moments of relief and regret.

There is a sense of relief at how quiet my phone is now. Over the last year or so, I had talked to Mom daily on the phone, and over the last few months, she was calling me multiple times per day sometimes, usually to remark about her pain or lack of effective medication. I began to dread seeing her face when it would pop up on my phone, signaling a call from her.

Mom was about the only person to call me on the phone. (I prefer written communication whenever possible.) My battery has dipped low a couple of times, but I wasn’t frantic about making sure I was available by phone because at this moment, for the first time in several years, I am not managing the care of an ailing parent. There is relief in not feeling like I’m on call 24/7.

The regrets pop up in scenes played out from the last month, when I was taking care of Mom. I think what I can take away from these flashbacks is to not get so lost in the necessary caregiving tasks that you forget the simple things, like trying to make it possible for a loved one to enjoy a moment basking in the sunlight, or having a spoon of ice cream. There may be risks involved in trying to make a dying person happy, but looking back, they are risks I wish I had taken.

What lessons have you learned from grieving for a loved one?

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May 23, 2015 · 11:54 am

My mother can finally rest in peace

My mother died Thursday morning.

It was a tough last few weeks, and the last hours were frankly brutal.

I can only hope she wasn’t in as much discomfort as she seemed, despite being given copious medications for pain and anxiety.

Mom loved her time in the Navy.

Mom loved her time in the Navy.

The hospice nurses and myself kept assuring Mom that it was ok to let go when she was ready. I felt like there was some internal struggle going on in there, despite the fact that she told me repeatedly that she was ready to go and was not afraid of death. She certainly did not want to linger in the state she did, non-responsive, devoid of her lively and happy personality, unable to eat or drink, and completely dependent upon me and the nurses for every task of living.

Maybe Mom’s spirit was just fighting with her stubborn body, and that determined heart of hers. The hospice nurses were quite surprised that Mom continued to live, considering the state of the rest of her body, but her heart and vital signs continued to be good. I was afraid, for her sake and mine, that it would continue to beat strong for much longer than it did. I was at her bedside when she drew her last breath, and I felt her heart beat slow, weaken and then come to a complete stop.

As you loyal followers know, this blog exists in part over guilt I had about my dad’s death, and how I wasn’t present when he died. I know being here to take care of my mom, and being present for her passing was the right thing to do.

But of course, there is a high price to pay on a psychic level by experiencing something so intense as a loved one dying. There are things I wish I hadn’t seen, tasks I wish I didn’t have to do. Time will no doubt provide a different perspective on the experience.

The important thing for now is that Mom was well-taken care of and she did not die alone.

As for what was beyond this life, Mom often said that, “It’s a good place and it’s a right place.”

I hope she’s right.

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May 17, 2015 · 9:00 am

Playing the waiting game with Death

My mother’s health took a big turn for the worse this week.

The hospice nurse expects her to pass in days, maybe a week, though her heart is very strong, so she could last longer.

Mother's Day

Mother’s Day

For her sake, and mine, I hope that the suffering is not prolonged.

She is now totally bedridden, somewhat delirious and a new pain complaint has popped up the last two days. She now complains of severe head and neck pain. The nurse cannot figure out what may be causing it. It is unlikely that the colon cancer, if it has returned, spread to her brain, though it is a possibility.

But the morphine is not really touching the head pain, even when dosed hourly. She is so “zonked out” by the pain meds yet still is pointing to her head and grimacing. That is tough to watch.

Mom’s face has been taken over by that ghoulish death mask. Her eyes are starting to look beyond.

But her heart continues to beat hard and strong in her emaciated chest.

In one of her lucid moments, my mother asked what had happened to her. And to that, I had no good answer.

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April 30, 2015 · 8:53 pm

Dying with dignity shouldn’t be so difficult

The last week my mom’s health has taken a steep decline. Barring some miraculous turnaround, it is fair to say she is actively dying.

Hard to believe this photo was taken just a little over a month ago.

Hard to believe this photo was taken just a little over a month ago.

While I have prepared myself for this moment, and have seen it coming for awhile, what I didn’t necessarily expect was how difficult it would be to just allow someone to die in peace and comfort.

I literally had to run all over town just to get prescription paid medicine for my mom. I know new regulations on controlled substances took effect this year, but frankly, if an addict wants narcotic pills they are going to get them no matter what. In the meantime, those who are legitimately in pain have to suffer.

The doctor made me go in person to pick up the prescription. They said they required a family member to pick it up, even the nurses at the home care agency my mom uses were forbidden from picking it up. Guess it’s good I just arrived in town! There is no way my mom could have made it to the doctor’s office.

There are plenty of pain-ridden people who live alone, what do these poor souls do?

And while I don’t necessarily want my mother to waste away in a hospital setting, I am surprised that the doctors keep sending her home from the ER. Uncontrollable pain, emaciated, can barely ambulate … I mean, geez, what does it take to be admitted to the hospital these days? The doctor told her she didn’t qualify for an inpatient stay under the new strict guidelines.

So we are starting hospice, but her overworked doctor has to sign off on it. I’m not too hopeful that it will be done quickly. While her doctor was off last week, my mom had no pain medicine and being cut off cold turkey really sent her health reeling into a death spiral.

So much red tape and regulations are getting in the way of treating people who are suffering with some form of dignity.

Family caregivers shouldn’t be left feeling helpless and devastated as they watch their loved one suffer needlessly.

I hope we can work together to advocate for better end-of-life treatment.

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January 16, 2015 · 8:23 am

What’s important is what was in the middle

I stumbled across this blog via a Facebook post. I’m not a religious person, but this blog post by Rev. Katie Norris is particularly relevant to those of us long-distance caregivers who struggle with guilt.

We should focus on happier times with our loved ones, not the final moments.

We should focus on happier times with our loved ones, not the final moments.

Norris has had to make the decision whether to return home for her mother’s last days multiple times. Dying of course is not a nice and neat affair, and one can be slowly dying for years. Most of us would like to be there when our loved one passes, but Norris points out that we have to accept our lack of control in this situation and that our ideal ending may not happen.

Ultimately, we must focus not on the ending, but the middle, on that time spent with our loved ones during the bulk of our lives.

I thought this was such a simple but profound philosophy. It’s a lesson that really hits home with me, because I have struggled so much with not being there when my father died.

I wanted to pass along the message to those of you who may be struggling with guilt or regret.

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October 15, 2012 · 8:16 pm

Each moment matters

I’ve had back-to-back tragic news to absorb over the past week. A daughter of a former co-worker was killed in a terrible car accident. She was only 28 years old. She was able to cling to life for almost a week before passing, so at least her family and friends had the opportunity to say goodbye, even as their hearts were breaking.

Then I learned that a local writer who taught a memoir writing class that I took last year passed away suddenly. She was only 50, and was such a vibrant, bright, witty person. She had suffered from seizures since being in a bicycle accident while in college. It is believed she had a seizure in her sleep.

Photo taken after the completion of the memoir writing class with author Julie L. Cannon. She is in the center with dark hair; I’m second from the right.

I only spent a few Saturday afternoons with this charming woman, along with a group of equally interesting writers. At the time, I was just beginning to try to write about Dad, and his experiences with Alzheimer’s. This blog was started with some of the building blocks I learned in her writing class. We had to submit a brief piece or two for critique and I remember being secretly proud as the teacher mentioned how moved she was by my work (she didn’t realize I was in the room at the time). She let us peruse her giant file of notes that she kept as she wrote her novels. It was a fascinating look inside the mind of a writer at work.

So two sudden deaths, lovely people with so much to offer to the world who found their lives cut tragically short. Beyond the despair, there’s a hard but valuable lesson to be learned. Life is by the moment. Not all of those moments will be wonderful or memorable, but some of us will have less time on this planet to make our mark than others. So we must use our precious time wisely.

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October 12, 2012 · 6:14 pm

“I want to take him home”

As I mentioned recently, it’s almost been a year since Dad’s final round of hospital stays began. Most of the memories from that time period are sad, naturally. But there were a few innocent, sweet memories collected along the way.

When Dad came back to Ruidoso after being in the dementia wing of the nursing home in Roswell for almost a year, he ended up at the local hospital for a respiratory infection. It was the first time I had seen Dad since summer and I was shocked by his emaciated frame and his non-responsiveness. It was pretty clear that this appeared to be the beginning of the end.

One day, two fresh-faced nursing students were making rounds. They stopped into Dad’s room, perky and bright. One of them exclaimed about Dad: “He’s so sweet! I just want to take him home with me!”

She could have been talking about a puppy, but instead she was referring to my Dad, who was slowly wasting away before us. Yet in her youthful eyes, she saw something precious. Perhaps that was naive on her part, but it was refreshing in the moment.

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June 27, 2012 · 7:22 pm

How life turns on a dime

With my dad, Alzheimer’s disease moved slowly but surely. Tell-tale signs here and there, and then one day, boom, it hits you. Dad had dementia and there’s no turning back.

With my mom, it seemed so sudden, though probably her health issues had been creeping up on her for some time. Her issues are primarily physical, while Dad’s were mainly mental. So health-wise, they are on opposite ends of the spectrum, but for me, the stress is identical.

I feel like I’ve been dropped back into that video game world, where your character is supposed to navigate around the bad guys and tense situations. Even sleep is troubled with stressful visions. I spent almost all of 2011 in this state. It is not a healthy state to be in, but I must be there for my mom, just like I tried to be there for my dad.

Yet again, there’s that gnawing feeling, that I should be with my mom right now, and accompany her to her appointment with the specialist tomorrow. (For the record, Mom soundly rejected that idea. She’s not gone yet!) Still, the tension of living with a parent who inches ever closer to Death becomes a shadow that fills every crevice of your life.

I only have one more shot at doing this right. I already regret not spending enough time with Dad while he was alive. I feel like I’m walking the same road with Mom right now, but until we get a proper diagnosis, I feel we are in this terrible limbo.

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