13 posts tagged “caregiver”

“I feel it needs to be told”: Member Cathy shares a memory

Posted February 21st, 2017 by

Last year, we spoke with Cathy (Catrin) about her experience transitioning into a caregiver role for her husband, Fred, who was living with bulbar onset ALS. Shortly after that, Fred passed away, and to mark the year of his passing, Cathy recently shared the following memory.

Here’s what she had to say…


“I have been saving this story for a while. Don’t know why but I feel it needs to be told. It is just a little story. No twists. No turns. No big reveals. But still. A story to be told.

Around this time last year, I ran the very quickest of errands. Fred was at a time of his illness we seldom left him alone. The kids and I we were a team in hanging with him. But we have lovely neighbors close and a prescription was needed, so just for the littlest of time, he was hanging alone. But that isn’t the story.

It was when I returned that the story began. As I’ve noted many times before, Fred went to too many concerts in the sixties. He always said that. Yet, on returning from my errand, I walked in to find Woodstock live in my home. It was 1969 again.

Jimi Hendrix was playing. So was Janis Joplin. Jefferson Airplane. Canned Heat. Still not sure why John Sebastian was there. Guess we will never know.

Those who knew Fred knew he never danced. Cotillion had ruined him. But there he was, dancing as best he could dance. Stomping his foot to Hendrix, occasionally playing air guitar. I dropped the prescription and immediately joined in.

For just a little time, the joy was back. 

Thank you Santana.

I still have Woodstock on the DVR. Haven’t played it since. But I tell this story because it is a testament to ALS. It is a story of hope, of perseverance, of determination. I was always so very proud of Fred, he was my very best friend. Yet it was in that moment I saw his deep abiding strength. I saw in that moment that though ALS had robbed him of his body, it would never steal his spirit or take away his soul. In the year that he has been gone, I write these little stories to keep his memory, my memories strong. I continue to walk the ALS walks. I continue to be loud.

ALS is a beast. We WILL defeat.”

#kickoutthejams #hopeisstrong

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“Hope makes us strong.” Cathy opens up for National Family Caregivers Month

Posted November 28th, 2016 by

Are you a caregiver or do you know someone who cares for a loved one? For National Family Caregivers Month, we caught up with Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife and caregiver, she has turned to the PatientsLikeMe community for help, encouragement and hope. See what she has to say below…

Tell us a bit about your life. How has it changed in the year since your husband’s diagnosis of ALS?

Living in suburban Nashville, my husband and I were enjoying his retirement. A former journalist and Corporate Communications Executive, we were busy keeping tabs on our family. One son living in our area, one son finishing college in Michigan and a daughter in Chicago. Before the diagnosis, we loved to take road trips. Before the diagnosis my husband loved to cook, he loved sitting on the patio, talking, drinking a beer and he loved to talk. His stories were endless. Being married to him for many years, I would, at times, roll my eyes. I had heard those stories many times before. But I loved them, nonetheless. Now, in the year since the diagnosis, we have all the kids back in Nashville. After learning their Dad was living with ALS, the kids packed their bags and moved home. We don’t take road trips anymore. His head drop makes travel uncomfortable. I am now learning to cook, hubby doesn’t eat anymore. We sit on the patio, but there is no beer. He still tells his stories, a bit, the text to speech “representative” tells them for him. I don’t roll my eyes anymore when I hear them. Now, I close my eyes and listen.

You’re new to being a caregiver. What is the most challenging thing about it?

Because I am a caregiver for my husband, the biggest challenge for me is knowing when to be caregiver and when to be a wife. As a caregiver, I am nurse, doctor, advocate, responsible for sussing out what is medically necessary and educating myself to gain an understanding of what is to come. As a caregiver, I have to administer tough love. As a wife, I just want to give him comfort and smother him in love. I want to magically cure him and have him back as he was. Since the caregiver understands that is not going to happen, I am slowly learning to merge the two roles.

What part of it do you enjoy or find rewarding?

I enjoy being an advocate. I truly and deeply believe a change is near for the ALS community. We must keep the momentum going. What is rewarding are the simple pleasures. A thank you from my husband for a back scratch, a hug from my kids … just because. A movie night with my friends or an encouraging word from a PLM friend. ALS has made me realize that the little moments of life are the rewards that matter (though a nice bottle of wine would be rewarding in itself).

You mention that your best friend has been a caregiver for both of her parents. Did that friendship in any way prepare you for your new role? If so, how?

My best friend has taught me love, patience, humor and perseverance. Watching her be a caregiver for her father with COPD (he passed away last May) and her mother with Alzheimer’s inspires me daily. She has shown me the wisdom of daily affirmations and how to find a quiet peace for my troubled soul. She is my hero. I don’t know what I would be without her.

What advice would you give to someone who has just become a caregiver for an ALS patient? Do you have any best practices yet to share?

My best advice would be to educate yourself. Read, learn, then learn some more. Do not rely on the medical community. Though your doctor may be brilliant, day-to-day management of this disease will be left to you. There are no easy answers. How ALS “behaves” for my husband is not how ALS will behave for you.  My best practices are maintaining humor. Keep your “patient” laughing as best you can. Many times my silly antics (disco lunchtime – complete with dance) have kept my husband from the depths of depression. Remind them that they are still a vital part of your life and your world will always and forever need them.

You often use the word “hope” in your posts. Like “Hope needs another cup of coffee,” “Hope loves tradition,” “Hope has more shopping.” Is this kind of like a personal mantra for you? 

Hope is, indeed, my mantra. I hold hope in high regard and expect those around my husband to subscribe to it. Without hope, we have nothing to hold on to. Hope makes us strong and keeps us stronger. Hope is the essence of life and our best defense. Hope knows ALS will be defeated. Our time has come.

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