Congestive Heart Failure

Create a new post for topic
Join the Conversation on
Congestive Heart Failure
2.2K people
0 stories
112 posts
About Congestive Heart Failure Show topic details
Explore Our Newsletters
What's New in Congestive Heart Failure
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

Caring, Loving, and Learning to Let Go

Hi everyone,

I’m a caregiver to two amazing teens with autism and ADHD. Caring for them is full of unique joys, challenges, and growth every day.

Before this, I was a mom and caregiver to two incredible sons who both passed away. My first son had cerebral palsy and died at age 4 in 2014. My second son had Down Syndrome, congestive heart failure, and a rare kidney disorder, and he passed away just before turning 21 in 2020.

The journey of caregiving has been one of deep love, immense grief, and constant learning. It is a role that shapes who I am and how I see the world, full of both heartbreak and incredible moments of connection and joy.

Now, as my teens grow and do not need my caregiving as intensely as before, I find myself facing the complex process of redefining my identity beyond caregiving. It is bittersweet to let go of a role that has been such a core part of my life, but I am also hopeful about discovering new parts of myself.

I am here to connect, share, and learn from others who understand the complexities of caregiving, loss, and finding new paths forward.

Thank you for welcoming me.

Lisa

Most common user reactions 3 reactions
Post
See full photo

Honoring Rodney’s Strength: A Memory Bear Full of Love

I ordered a memory bear made from similar material as a suit my son Rodney used to wear, what we called his "power suit." He passed away on October 31, 2020, from a rare kidney disorder called Alport’s Syndrome. Rodney also lived with Down Syndrome, Congestive Heart Failure, and Pulmonary Hypertension. He was a true fighter from the very beginning and defied so many odds by living almost 21 years. Though he is deeply missed, this memory bear will always help me keep his spirit close. It’s a small comfort that honors his strength and the love we shared.

Most common user reactions 7 reactions 8 comments
Post

Slowly grieving as the essence of Dad disappears before actual death.

Parkinson’s, cancer and congestive heart failure have slowly replaced my father’s brain and body with an entirely different kind of physical and emotional state. I still reach out to him almost daily and listen to him and tell him that I love him but he’s disappearing in front of my eyes and heart. I’ve been grieving for almost a year now and I never know how he’ll be or if Dad will be still be alive the following day when I try to reach him. My husband’s hug afterwards is really welcomed. I know that I will grieve still long after my father passes.

Most common user reactionsMost common user reactionsMost common user reactions 44 reactions 24 comments
Post

I have lost my husband of 40 years

I haven't really cried yet. I think I've done my grieving a long the way since he had congestive heart failure. He had breathing problems so he was on oxygen, and he also slept in a hospital bed. I hope to take his ashes to places he loved on Oregon. It all seems so overwhelming.

Most common user reactionsMost common user reactionsMost common user reactions 61 reactions 13 comments
Post
See full photo

New Member Introduction

Hi everyone, I'm new here and a bit nervous about sharing too much or too little. But here goes!

I'm a lifelong heart patient who's been through 4 heart surgeries, an artificial valve, congestive heart failure, AFIB, shortness of breath, HepC (dormant until a 2010 heart surgery, of all things), 2 back surgeries, chronic pain, and fibro. It was tough—I was housebound for over 10 years. Medical marijuana changed everything. It helped my depression, manages my pain, helps my insomnia, and allowed me to live again.

Ironically, my health improved just in time for me to become a caregiver for my 77-year-old mom, who's been healthy her whole life. It's a rollercoaster, and I struggle with feeling like there's not much I can do. When it's my own battle, I can at least fight, but it's different when you're caring for someone else.

In this group, I hope to both give and receive support as we navigate our mental health journeys, learn from each other's experiences, and grow stronger together. Let's conquer our minds, one day at a time! 🧠💪

#MightyTogether , #conquery #MentalHealth #ChronicIllness , #painman , #Depression , #anxietysupport

Most common user reactionsMost common user reactions 114 reactions 22 comments
Post

#Grief

Hello, I have been having a little bit of an emotional hard time these last few days.

When I was 14 I lost my mother to breast cancer. I mean I was 14, a teenager, freshman in high school. Had no idea how to deal with the loss of a parent let alone my mother. Who was going to help me get ready for my first date, first high school dance? Who was going to help me get though my first heartbreak. Yes I did still have my father but he was also mourning the loss of the love of his life. He didn’t know how to raise a high school teenage girl. He did his best. Even taking me to buy new shoes when I went through my first heartbreak 🤣❤️ who doesn’t love new shoes? This was the first loss I had to deal with at a young age.

Well 14 years pass and it’s 2019, I’m 2 days past my 29th birthday. I wake up and head to my fathers room to wake him because his alarm had been going off for a few minutes. I thought to myself, he must be so tired if the alarm isn’t waking him. I get to the door way and my heart sinks. He isn’t waking because he passed away in his sleep. I knew the minute I got to the door. He was pale and my 1 dog was glued to his back and wouldn’t leave his side. Got closer cold to the touch, lips were blueish purple from being cold. Surprisingly I was very calm in this moment and was able to call 9-1-1. This was a long day. A long sad day. So many calls I had to make. So many questions I had to answer. He was my rock, my held everything together the best he could. Even when he had to deal with his own health issues. He had congestive heart failure along with diabetes and was in stage 4 kidney failure. But still everyday was there for me, helped me and raised me to be the strong woman I am today. Always made me laugh with his dumb dad jokes that are funny because he makes them funny while he’s telling them.

I’m relieved both my parents are not in pain anymore and are back with each other living out their eternal lives together. They were each others best friend, love of each others lives. Amazing parents to myself and my older brother. Fun, loving and caring people.

But here I am now 33 years old. I don’t think I’ve totally grieved both these losses and am having a hard time with both of them and missing them dearly. I have an amazing fiancé, whom both my parents would have loved so much. Building this beautiful life together while they are not here to go through these milestones with. I know they are here in sperit but it’s just not the same. Not the same to not have my mother help me get ready on my wedding day, or my father to not be here to walk me down the aisle to this amazing man that came into my life and the perfect time. To be here to meet my future step daughters. To buy my first house (sometime in the future lol) these are the things that are going to be so hard to go through without them. I miss their voices and their laughs and hugs. I miss them so much. Thank you to both of them for helping me be the women I am today ❤️

Most common user reactionsMost common user reactions 19 reactions 6 comments
Post

I'm new here!

Hi, my name is DiscoSeahorse8655. I'm here because
I have Osteogenesis Imperfecta type 1, Aortic Heart valve leak, Congestive Heart failure, A-fib, Type 2 Diabetes, Asthma, Reynauds Disease, Degenerative Disk Disease and, s3 a Rheumatologist tomorrow because my Podiatrist thinks I have Rheumatoid arthritis.#MightyTogether

Most common user reactionsMost common user reactions 4 reactions 2 comments