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Caregiver looking for support
In October of 2015 on what seemed to be a perfectly normal Friday night my husband and I were laying in bed when he began to struggle to catch his breath. He sat up on the side of the bed and slurred the words call 911! So I jumped up called 911. Paramedics arrived within minutes and away they whisked him off to the ER. There he was diagnosed with CHF and dilated cardiomyopathy. He spent three days in the hospital and on the fourth day they sent us home with a bag full of meds,told us to follow up with his cardiologist and good luck. The first two months were hell! Adjustments to meds, Dr. appointments/ tests and trying to wrap our heads around this ever so terrifying diagnoses. A heart cath was performed one month after the diagnoses and all was clear. I'd say within the third month he was back Working full time, very little to no issues. Slowly but surely discontinued his meds, still ate complete garbage, loaded everything down with salt and to this day over 5 years later has not exercised one time, nothing, not even a walk around the block. He has not seen his cardiologist in over 3 years and has zero tests or labs done. This past January he started to have trouble sleeping at night having to sit up to sleep bc when he would lay down he would feel extremely "short winded" as he would say. Since this time he's slowly stopped all physical activities in less it's sitting on a stool with wheels to get around in his garage to wax and wash his babies. He's constantly complaining of shortness of breath after he eats or when he's sleeping or just sitting around. Has a ton of digestive issues. Severe bloating after eating. He's lost about ten pounds over this past 15 months and his muscle mass is noticeably decreased. His quality of life is non existent. Depression has most definitely crept in and if I mention going to a Dr. he snaps! He's riddled with hip and leg pain due to being told he desperately needs a full hip replacement. But refuses to do that also. My heart goes out to any caregiver, friend or family member who is engaged in witnessing a person literally do nothing to fight for their own life. As a caregiver I'm exhausted, I'm frustrated, isolated and honestly spent emotionally. This man will pop a half of diuretic once a week and think that's all that he needs to "fix him" I ask for prayers from all that are willing to send up a few for him and for me. I have no idea how long this journey will be or how much harder it's going to get. Through watching him I have decided to never give up on me , to educate myself on any health obstacles I may have to endure in my future and to fight like all get out to live a life full of quality.
AHAModerator, April 5, 2021 4:57pm EST
Thanks for sharing your story with the Patient Support Network. We're glad you're here and, please, remember that you are not alone.
I'm sorry to hear about the challenges of being your husband's caregiver. It sounds like a very stressful situation all around. It's perfectly normal to feel frustrated, isolated, and unsure of yourself at times. It's also important to make time for yourself as well. I wanted to share a few resources that may be helpful for you.
Resources for Caregivers:
Top 10 Caregiver Tips For Staying Healthy and Active:
Mental Health and Heart Health:
We wish you the best in your caregiver journey. Please keep in touch and let us know how you and your husband are doing.
JamesPL, April 5, 2021 7:47pm EST
I couldn't agree more that it is so important to make time for yourself. I know that you have done all that you can to care for your husband but do you think he would ever consider counseling? It's possible he just doesn't want to accept his condition and a counselor may be able to open his eyes. I was warned of the association between heart disease and depression when I had my own diagnosis. But to the first point, please take care of yourself. Your husband may not wish to exercise but you should. Simple walks, bike rides and other types of enjoyable exercises will go a long way toward clearing your head and helping you cope.
Wishing you both well!
mghd20, April 7, 2021 6:36pm EST
Hi Becky, Guess it would've helped to read this post first.
All too much of this, I feel, seems like it's directed at me also. I'm as stubborn as they come. Got diagnosed well over 15 years ago. All these symptoms as well for me. Fast forward to early 2018, I think. Decided to see a Cardiologist. Prescribed meds and it didn't take too long before I played doctor and stopped taking them. I'm on the way to 18 months passing and I'm having significant trouble climbing stairs for my job. Looked down at my feet and couldn't believe that they were swollen. The trouble sleeping --- my heart beating out of my chest, the whole nine yards. It took almost collapsing to get me to the hospital.
November of 2019 I get out of the hospital and they say they want to do a procedure to deaden the false signals within my heart [ Cardiac Ablation ]. I said no thank you, that's too invassive. Their plan B was a [ Cardioversion ]. A paddle on the back and paddle on the front to reset the rythm of the heart. Another long story short ---- I spent a second short stint in the hospital because my heart rate was below 60bpm. They wouldn't discharge me unless it was above 60bpm. They said, you need a Pacemaker / Defibrolator. I got the same heart catheter as your husband. Doesn't get more invassive than that.
MESSAGE TO YOUR HUSBAND: Buddy, I could give you one hell of a run in the stubborn department. I come from a family of 8. (2 parents but Dad passed in '92) with 1 brother and 4 sisters. The six others have tried to help me in every conceivable way, including loosing their minds with yelling and screaming at me. I have yah'd them to death and even tried to be as sincere as I could but with reservations in my heart of running the show my way. It's gotten me nowhere. I could be pacemaker free if I'd just got off my duff and did what was necessary. This device is in my chest until the day I die and barring an infection, they tell me, it's NEVER COMING OUT. You have a wife and I have a hockey team that are willing to go to their graves to fight for our lives.......
........ I have this deepseated contempt for myself that has completely shut every good person and opportunity out of my life. I'm only writing to you for the selfish reason that I hope this will help me. If it helps you, great. I'm pouring my heart out in the hopes that all this helps me. My family has needed me my whole life and yet, I could be hugging them and still be miles away. I'm in the position of needing to turn the exact same corner as you are ( letting someone, anyone in) so I can get the help I so desperately need in order to scratch the surface of paying them back.
MY LIFE IS LIKE A CRASHING PLANE: If you've flown before, they always tell us, Put the mask on yourself first and then help others. My plane is exactly like yours ..... headed for that mountain. All I have to do is put my mask on and pull back on the stick. After that, I can let others help me reach my destination.
Becky, Like I say, I hope this helps me :-) and, of course, helps both of you.