Tag Archives: death

Breaking the news to someone with Alzheimer’s that their spouse has died

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Photo credit: Pixabay

Of all the things families have to deal with when their loved one has Alzheimer’s, explaining that a loved one has died is one of the most heartbreaking and difficult issues to handle. Guest author Michael Longsdon of ElderFreedom offers tips on how to approach this sensitive subject, and how caregiver should prepare for the moment.

How do you tell your loved one with Alzheimer’s that their spouse has died? It’s a tricky proposition – one that people with aging parents dread. It would be a lie to say it’s a easy process, but it can be manageable. Here are some tips.

Pick the right time

This is a judgment call, but some common strategies for having this tough conversation include making sure the person is in a safe, comfortable environment, trying to pick a more lucid moment to break the news, and trying to have only one person deal with the news as to minimize possible confusion.

Be straightforward

Every surviving spouse has the right to know that their loved one has died – no matter their condition. When having the first conversation (of many, to be sure), you must be as straightforward as possible. Speak slowly and calmly and tell them that their spouse has died. Avoid euphemistic phrases like they passed away or they are going to be gone for a while. You don’t have to get into the details, and you should stick to the basics if you can. If they ask for details, however, you should be honest.

Offer to go through the deceased’s belongings with them

The practical reason for doing this is that following any death, the surviving loved ones must go through the deceased’s belongings and decide what to keep, what to pass on to loved ones, and what to throw away. For someone with Alzheimer’s this process is vital because you don’t want them to have to do it themselves, plus you don’t want them to have to stumble upon troves of their dead spouse’s belongings, triggering confusion or agitation.

But it can be even more important in the immediate aftermath of the death. Going through old clothes, photos, jewelry, and keepsakes can help ground your loved one to the situation, and in some cases this methodical sorting through possessions can be cathartic. Your loved one may want to hold onto a particular item, which may give them comfort. Let them.

Don’t mistake forgetfulness for denial

“When dementia is severe, people aren’t just in denial. They truly have not been able to form the new memory that lets them remember their beloved family member or friend has died,” says caregiver Carol Bursack.

You’re going to be faced with times that your loved one simply doesn’t seem to be on the right page about their deceased spouse. They may think they’ve gone on a trip, or that they’ve left them. They may ask where they are, even hours after you told them about the death. Don’t think of this as denial. It’s simply a product of their Alzheimer’s. When it comes to what you do in these situations, it’s up to you. Judge the situation and determine whether it’s better to reinform them, or whether you should “punt” and either work around the truth or redirect them with something else. There’s really no right answer here –  it all depends on your loved one’s state at that very moment. It can change from day to day.

You may have to “break the news” to your loved one with Alzheimer’s more than once. How you choose to handle these situations is up to you. Most professionals believe, however, that the initial conversation is a must – both for ethical and practical reasons. Try to find a good time to have the conversation, remember to be straightforward, respect their reaction, and never try to limit their grief.

 

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Marking 2 years since Mom died

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It’s hard to believe it has been two years since my mother died. The world seems like such a different place, even though two years is but a speck over the course of history.

While merely coincidence, Mom’s death seemed to send the universe into a chaotic spiral. I feel like I’m living in perpetual survival mode, just like I did when I was a caregiver.  Mom’s eternal optimism would have been sorely tested over the last year or so.

The grief is less oppressive and not as constant at this point, but it continues to lurk in the dark alleys of my mind, popping out like a villain in a movie from time to time. The “should’ve, would’ve, could’ve” mantra hasn’t been silenced quite yet, but I’ve been able to turn down the volume on the second-guessing for the most part.

Just like in this photo of Mom, I will spend the day writing. She always loved this photo, which appeared in the yearbook. Mom took her education seriously, which wasn’t always a given for farm families when crops could trump classes. I inherited a similar love of learning from both of my parents, which is a precious gift that I use every day.

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Thinking of Mom

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Mom and I at the library, before taking a stroll through the park.

Happy Mother’s Day to all of the wonderful, patient and loving mothers out there, both living and departed.

Even though it is easy to roll one’s eyes at this “Hallmark holiday,” it is a good opportunity to remember those who have cared for you and those you love. Mothering comes in many forms, from traditional to caregiving to caring for pets. A simple thank you, a sympathetic ear, a helping hand, all of these go a long way to honoring the mother(-s) in your lives.

Mother’s Day is extra difficult for me because once I get past today, the anniversary of my mom’s death looms on May 21. It’s a double gut-punch of a month now.

I’ll remember Mom today by doing some birdwatching in the backyard (our birdfeeder has become quite the hotspot) and taking a walk to appreciate other wonders of nature that my mother loved. One of Mom’s best qualities was always “stopping to smell the roses.” She appreciated every flower, every bird, all of nature’s offerings. It’s a good reminder for me to take time to enjoy nature as well and seek a healthier balance between work and other demands of modern life.

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Marking five years since Dad’s death

It’s hard for me to believe that five years have passed since my father’s death. So much has happened in those five years that I feel almost like a different person, or that I experienced December 20, 2011 in a different lifetime.

Little did I know at the moment I learned of my father’s death, in the newsroom of the Atlanta Journal-Constitution, on a cold and rainy Tuesday, that six months later, I would become caregiver for my mother. Even at that moment, the colon cancer was likely growing inside of her, waiting to make its ugly appearance in our lives. I thought I would spend 2012 grieving for my father, but instead, I had to shelve my grief in order to care for my mother.

I never expected to be virtually unemployed for well over a year after my mother fell ill. It was my father’s death that allowed me to pursue new career opportunities, as I had not wanted to take a new job when I knew he may pass at any moment. It turned out to be a bad move, and when Mom required emergency surgery, I was forced to quit after just two months, to go tend to her in New Mexico.

If I had guessed what my life would be like five years from that dreaded day in December 2011, I would not have imagined my mother being dead for a year and a half. She was 74 at the time of my father’s death, and appeared to be in good physical shape. I was most concerned about her loneliness and depression after Dad’s death.

Sometimes it all seems like a bad dream, but of course, I know all too well that it was real life. Good things have happened over these five years: my writing won an award, I secured full-time employment again, I’m slowly but surely crawling my way out of debt. I’m using my experiences, both positive and negative, in the caregiver advocacy role that I now cherish. The past five years have been turned into essays that have touched people and generated conversation around the topic of caregiving.

I certainly would never want to live the past five years of my life over again, but I am a better person for surviving them, and for taking the lessons my parents taught me to help others in a similar situation.

 

 

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Writing about caregiving

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I spent last week at a writer’s retreat in New Hampshire. It was a wonderful experience, and just what I needed, to unplug and at the same time, recharge my writing inspiration.

I turned off social media, and turned inward to focus on what I really want to share about caregiving and how I should present that in written form. I also opened myself up to others who were going through their own painful experiences. But there was also plenty of laughter and great stories shared among the group.

Even for caregivers who don’t fancy themselves writers, taking a writing workshop can offer them a supportive stage to share their thoughts and feelings about the caregiving experience, giving a voice to those who are often forgotten or fade into the background.

Our teacher commented at the end of our time together that caregiving will eventually touch most, if not all of us, and that is so true. Even in our small group of memoir writers, there were people who had served as family caregivers and who were dealing with the deaths of spouses, parents and other loved ones after lengthy, debilitating illnesses.

Even if you don’t plan on writing a book, consider taking a writing workshop. There are plenty of one-day or weekend workshops, so no need to make it a full-fledged vacation (though it was a wonderful indulgence for me.) If you enjoy blogging, you may be surprised what the writing prompts at a workshop can bring out. You may be challenged to look at an event from a different perspective, and the feedback you get from fellow writers and instructors can be insightful and useful.

While I know talk therapy works for some people, I’ve never been a big fan of it personally, mainly because I don’t like to express myself verbally, especially when forced to talk about myself. But through writing, I’m able to do that with a greater comfort level. I also like the added bonus that I get some writing done while working through tough situations.

The most important thing of all though is that if you enjoy writing, keep it up! Whether you make it to a workshop or your writing ever sees the light of day, just the physical act of expressing your feelings is so beneficial.

Do you do any writing outside of blogging? I would love to hear about it.

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Getting creative with dying

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John Evans/Freeimages

Thanks to those who participated in my caregiver survey. The OpenIDEO end of life challenge is going through its final review, and top ideas will be announced in the coming week. Regardless of the outcome, the experience has been educational and inspirational.

I spend quite a bit of time on this blog sharing my frustrations with the health care system, but the good news is there are a lot of compassionate, smart people out there who are working on solutions. They want to improve the experience of those nearing the end of life, the death process itself and the caregiver’s well-being.

The ideas generated in this challenge were truly awe-inspiring. Some of my favorite ideas included musicians writing and playing songs for those in hospice inspired by the dying person’s life. I loved this idea because not only would it offer comfort to the dying, but also would be a memento the family could keep forever.

I also was inspired by the “Leave a Wish” idea, which would allow you to leave any message you want for family members after you have died. It could be something like hiking to a favorite spot to mark a holiday, or making sure your loved ones fulfill their own goals, like writing a book or running a marathon. I loved the way this idea could allow you to connect with your loved ones even after you are gone.

Other ideas included green burial options, documenting a loved one’s life stories and encouraging greater discussion of end-of-life wishes.

There were so many wonderful, innovative ideas that I can’t go into them all here but you can check out the full list on OpenIDEO.

It’s reassuring to know that there are good people out there who want to make dying not something painful and miserable, but a final phase of life in this world that can be meaningful and inspirational.

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Thinking of Mom on her birthday

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My mom on her 77th birthday.

Today would have been my mother’s 79th birthday.

Sometimes I still can’t believe that my father outlived my mother. He was 79 when he died.

It’s also hard to believe sometimes that just two years ago, I was celebrating her last birthday alive with her. I’m glad I made the trip, it’s not something I always did, but at least I did it when it counted the most.

After I passed the year mark of my mom’s death, it felt like a veil lifted. I’m more at peace now and less bombarded by flashbacks of her death and final months.

Today I will try to remember the good things: my mother’s corny but infectious sense of humor, that southern accent she never lost, her generous and kind spirit.

How do you mark the birthdays of those who are gone?

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