Tag Archives: death

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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February 19, 2015 · 8:35 am

On being mortal, from a doctor’s perspective

I watched an interesting Frontline special about end-of-life issues, from the perspective of a doctor treating terminally ill patients. The show featured Dr. Atul Gawande, who wrote the book, “Being Mortal: Medicine and What Matters in the End.” The book came out last fall, but I have not had the chance to read it yet. Another one added to my wish list, so many good books, so little time to read them!

being mortal cvr

In the program, Dr. Gawande tracks other doctors and interviews them about their approach to end-of-life care. Because of some negative experiences, I sometimes unfairly assume that the typical doctor’s main goal is to prolong life for as long as possible, quality of life be damned. But this documentary highlights the emotional turmoil that doctors experience when they are forced to tell their patients that medically speaking, there is nothing else to be done and it is time to transition to palliative care. The doctors feel like they’ve failed their patients when they cannot heal them.

Some patients accept the bad news with peaceful resignation, others go into denial, and still others fight the good fight for too long. One of the saddest stories was of a young woman about to give birth who was told she had stage IV lung cancer. She gave birth with a collapsed lung and immediately began a harsh and toxic treatment regimen. Of course one can understand why, she had so much to live for! But her husband now regrets the time she spent so ill from the treatment, which did nothing to extend her life. He wishes they had spent more quality time together as a family.

While somber in nature, the program offered a variety of takes on how to approach end-of-life care. It’s worth checking out. I watched in on the PBS channel on Roku.

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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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December 25, 2014 · 4:38 pm

Christmas doesn’t have to be perfect

I know many of you out there are celebrating a less-than-ideal holiday. You may be visiting your loved ones in a care center. They may not be able to communicate with family anymore.

Or like me, you may be grieving the loss of a loved one today.

mom-dad-xmas

But as many of you have illustrated on your own blogs, wallowing in pity will not make the holiday season any brighter. While it takes effort, we must find ways to appreciate what we do have, and cherish the happy memories with those who have departed.

No day is perfect, just like no person is perfect. But every day and every person is special, if we only take the time to seek out the good.

Merry Christmas and Happy Holidays to you and your family.

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December 20, 2014 · 5:26 pm

Dad, three years gone from this world

Today is rainy, chilly and dreary, just like three years ago when I received the dreaded phone call that my father had died.

Everything else is so much different.

One of my favorite photos.

One of my favorite photos.

Little did I know at the time that I had taken the first of many significant dips on the roller coaster of life. Mom, always the picture of health, was diagnosed with stage III colon cancer just seven months after my father’s death. I quit my job to take care of her for the next six months. It would be another year before I secured any regular work.

I discovered that freelancing is best approached when you have time to plan and build clients, not for a sudden source of steady income. I learned that being a really good employee doesn’t get you very far in this job market.

And perhaps most importantly, I immersed myself in the world of Alzheimer’s activism, and learned so much from the stories I read.

So I am definitely a different person than the one who answered that phone in the middle of the newsroom on December 20, 2011. I hope I’m a bit wiser, and a lot more compassionate.

Tonight I will light a candle, toast Dad’s spirit with a glass of Irish whiskey and remember his wonderful singing voice, realizing that one can smile and mourn at the same time.

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December 10, 2014 · 7:40 am

Time makes some wounds less painful

Here is a realist take on grief. Time does help. Time is like a new layer of skin that develops over a gaping wound. It takes awhile before the wound is covered, and even then, that new protective layer is quite fragile. But if tended to properly, that new layer of skin will completely cover the wound and most people will never know you had an injury. Even if no physical signs remain, you will remember the wound.

clock
That’s how I feel this year, as I approach the third year anniversary of my father’s death. As I’ve mentioned, I’m back working in the same building as I was on the day he died. All of the same Christmas decorations are back up. I’ve been struck with bouts of wistfulness and flashbacks to that day when I got the call that my father had died. But the black cloud isn’t quite as dark as it was the last couple of years. Of course, nowadays concern for Mom takes up a lot of my thinking time. But still, I know part of this is the natural grieving process.

There is no timetable. For some people, it may take a year, for others several years, and frankly, some people may never escape those black clouds. None of us should be judged by how we grieve. Of course, if we think loved ones are in danger of hurting themselves or others because of the weight of their grief, then action should be taken to intervene and get them help. But the grieving process is very personal. While it may help to read books to know the stages of grief, etc., it truly is one of those things you don’t fully understand until you experience it.

How have you handled your grief over the loss of a loved one? Has the passage of time helped?

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March 27, 2014 · 4:44 pm

Supporting a grieving friend

I want to take a moment to send my condolences and loving support to Terry Shepherd. While I have never met her in person, I feel I know her quite well, as I’ve been following her terry1954 blog for awhile.

al-collage

Terry was the primary caregiver of her brother, Al, who had a terribly debilitating disease called Multiple System Atrophy. Al was mentally challenged as well, which complicates the caregiving situation. Over the last several months, poor Al has essentially been dying a slow death. While Terry had some home health help and a dear friend who would offer her moments of respite, Terry took care of most of Al’s needs, from feeding to bathing and changing his diaper. Terry bravely and beautifully documented her caregiving experiences on her blog. She has many blogger friends who like me, know what a special person she is and offered support and advice throughout the ordeal. On Monday, Terry wrote on her blog that the angels came.

Those of us who have experience the death of a loved one, especially when long suffering is involved, know that there is some level of relief that their loved one is free of pain and disease. But of course, the grief at the loss of someone you’ve been so close to and have taken care of is still so painful to bear. If you have any words of solace or support you would like to send along to Terry, you can do so on her blog.

I have learned so much from Terry. The patience, love and fighting spirit she had in caring for her brother is admirable and a great example for all of us to follow. She does not sugarcoat the caregiving experience: the loneliness and isolation, the frustration with care providers, the hopelessness and exhaustion. Terry bares her soul on her blog, and I can only hope that her blog followers offered her at least some solace through our support and prayers for her and Al.

Rest in peace, dear Al. I hope you are flying with the angels.

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December 20, 2013 · 11:05 am

Two years since Dad died

It’s hard to believe that today marks the second anniversary of my father’s death. My grief is still pretty raw, yet the person I was back then seems like such a distant memory. So much has happened, both good and bad in the two years since his death that it almost seems like another lifetime.

view-122013

The weather is dreary, much like the day he died, though at least there’s not a cold rain. In fact, it’s unseasonably mild, making it ideal walking weather. So I took a long walk on my neighborhood’s walking trail, something Dad would have enjoyed. Then I stopped for coffee, another of Dad’s favorite things. I made a donation to the tribute fund for Dad through the Alzheimer’s Association. I’m dedicating the day to writing about Dad and promoting Alzheimer’s awareness. I’m listening to the Bing Crosby channel on Pandora while I write. They are playing so many of Dad’s favorite songs.

One of my favorite photos.

One of my favorite photos.

I’ve also started a Tumblr to vent about the rocky road of caregiving. Feel free to check it out, it’s called The Caregiver Vent. Warning, because it is a vent, it is uncensored so occasionally profanity is used. If you’re on Tumblr, let me know.

What I’ve learned over the last couple of years is that it is the effort we make in taking care of our loved ones that matters more than the results. Even the most skilled caregiver in the world cannot clear the confusion of a dementia patient. Those with dementia may not recognize their family caregivers. What it comes down to is you being able to live comfortably with the actions you take as a caregiver. You will make mistakes, we all do. Just try to avoid making poor decisions that will haunt you. And above all, be forgiving. Of others, and of yourself. I’m still working on that last one …

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