foamman
  • 7 replies
  • 392 views
  • 6 followings
foamman, September 9,  2019  6:55pm EST
ANT_8873_r.jpg.

care giver to my husband stage 3 chf

My husband was just upgraded to stage 3 heart filure, and given 40% chance of lasting 5 years, we have been married 49 beautiful yrs, he also has been referred to santa clara for a possible mechanical heart, ( no heart transplant is possible) they are is no more meds they can give him, and nothing more they can do to improve his health, he was in the hospital for 20 days off and on in august and many many health issues due to heart failure and their complications. I am looking for support, to deal with the sad fact he is on a steady decline. It breaks my heart, he is my soul mate.  thank you

7 Replies
  • JamesPL
    JamesPL, September 10,  2019  12:10pm EST

    So very sorry to hear this. Please know that you are in our thoughts. Please also exhaust all resources. Look into any and all other health care opinions if possible.

    wishing you all the best and hoping for alternative treatments

    jim

     

  • JKViggiano
    JKViggiano, September 10,  2019  4:23pm EST

    You leave a legacy of a beautiful marriage. Well done. I hope you both can make the most of the time you have together. God bless.  jill

  • AmbassadorC
    AmbassadorC, September 10,  2019  9:19pm EST

    A warm welcome to the support network. My heart is saddened that you are going through this. Know that you can reach out to us anytime as we are here for you. My fellow heart warriors gave some great words of encouragement and resources. Know that as the caregiver and advocate for your husband, keep the lines of communication open with the medical team. If at any time you don’t feel comfortable, by all means ask as many questions as you need and even second opinions if necessary. Know in your heart, you are doing everything you can. 

    Stay strong and know that we are here for you. Our thoughts are with you.  

    With heart, 

    Ambassador C 

  • jerzeycate
    jerzeycate, September 11,  2019  2:33am EST

    foamman,

    Having been caregiver for my Mom for quite a while,  and it's not easy. 

    Since developing my own complex cardiac disorder and watching the toll it has taken on my husband I've decided that sometimes, being the patient is actually the easier of the two roles.

    Here is something I wrote about my husband, and the toll of being a caretaker, after I'd had a Mild Stroke (due to AFib).

    Stroke comes out of nowhere. 

    Strikes a person down without warning.

    A friend.

    A relative.

    A spouse. 

    A partner.

    A Parent?

    Maybe it’s a child.

     

    Stroke holds many secrets.

    Loves to take prisoners.

    Shows no mercy.

    Transforms people. 

    Changes lives forever.

    Leaves families in its ruin. 

    Everyone is thrown into the turmoil of abrupt change.

    Things will never be the same again. 

    And that’s a "best-case scenario."

     

    I had a mild Stroke. My recovery was swift and quite successful. 

    Yet I still suffer from leftover troubles  –

    • fear of another Stroke

    • random bouts of depression

    • loss of self-confidence

    • increased anxiety

    • a total inability to multitaskShort te

    • memory problems 

    • emotional swings I worry they may "take me over the edge." 

     

    I am viewed as a “Successful Recovery.”

    My Stroke was quite a while ago. 

    Like many Stroke patients, it was weeks, a couple of months before the haze cleared and I could see the effects the Stroke had on my life.

    Fortunately, or unfortunately, my husband saw them immediately.

     

    That morning he had rushed me to the Ophthalmologist's office when I woke up with a strange, awful pain inside my eye. While my eye was fine, the “Eye Doctor” said I was having a STROKE.  I thought he was nuts but went to the hospital willingly since the pain in my eye hurt was so bad. By the time we reached the ER (half-a-mil I had the telltale facial droop, my right hand could not grasp anything and I was dragging my right leg behind me.

     

    My husband spent hours, days, pacing the hospital. 

    Looking for all the information he could find. 

    Quizzing doctors and nurses about my treatment. 

    Watching my therapy sessions as I got back on my feet. 

    Checking for signs that things were getting better or getting worse. 

    Talking to the doctors, the nurses, the therapists and the caregivers of other patients about my progress… “What to expect.”

    He encouraged me. 

    He held my hand. 

    He promised me that I would be "fine." 

    He repeatedly gave me the Hope I needed.

    Telling me that everything would soon be "back to normal."

    All the time fearing, knowing, it wouldn't. 

    Preparing himself for the worst.

    It changed us. As individuals, and within our relationship.

     

    As suddenly as Stroke appeared, I was declared stable. 

    It was time to go home.

    We realized things would never be quite "the same" again.

    This was a major upheaval in our lives physically, mentally.

    It touched the very core of our souls. 

    Even if I had a full recovery - Everything was changed

    He faced his worst fear- I was going to die. 

    He stood nearby while doctors examined, assessed, then treated me. 

    He sat nearby while therapists worked with me. 

    And then he took me home. 

    It changed us. 

    Changed us as individuals and within our relationships.

     

    A "New Normal" comes for each of us recovering from Stroke. 

    It comes as a new way of looking at situations…

    Accepting limitations you may have,

    Working to get through them or go around them.

     

    While everyone is working with us to make these transitions, our partners, or families are usually left to fend for themselves. 

    The attention of the doctors, nurses, therapists, was on me. 

    Not my husband.

    No one asked how he felt, "about the Stroke." 

    No one held his hand for comfort. 

    No one examined him. 

    No one explored,"What hurts?” 

    No one questioned him about his concerns? 

    No one checked his vitals. 

    No one cautioned him to watch his level of stress. 

    No one brought his meals.

    No one checked to make sure he was getting the proper sleep. 

    No one suggested he schedule breaks or rest when he got tired.

     

    He heaved a sigh of anxiety and relief and took me home. 

    Got me settled.

    Found someone to stay with me.

    Then headed to work, to pick up groceries…

    To complete one of the hundreds of chores necessary to keep us going.

    He panicked each time his phone rang. 

    Wondered if he would return home to find his worst fear come true.

     

    With the "New Normal" I recognized my life had changed.

    I was struggling.

    I was learning to adjust.

    I was mastering ways to adapt.

    So was my husband.

    But in his case no one noticed.

     

     

  • foamman
    foamman, September 11,  2019  6:36pm EST

    God bless youboth, thank you for your story, it helps. Kathy

  • jerzeycate
    jerzeycate, September 26,  2019  7:38am EST

    foamman, 

    I've been thinking about you and your husband. When I was told that 50% of those with CHF die within 5 years of diagnosis my question was this: What Do I need to Do to Be One of the 50% who DOES survive. I then followed those instructions... And that made all the difference.

     

    I did not come this far just to come this far...

          Cathy

     

dark overlay when lightbox active
dark overlay when lightbox active
dark overlay when lightbox active
dark overlay when lightbox active