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My husband has had an ICD for 10 years now, and is still scared to death of it. All he'll do is sit and watch TV, as he's afraid that if he does any physical activity, he will get "thumped". Needless to say, he's depressed and our marriage is going downhill. Help...
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Exercise Counseling Memory Heart attack Mental health Syncope
Hi Shamrock,
Has your husband gotten a shock from his ICD? I understand it is quite painful, if only for a moment. Would he be willing at all to talk to a counselor? I went for help after my SCA and it made a big difference.
I'm sorry this is so difficult. :-(
Mary
Wow. 10 years. It has only been almost 2 months and I see my husband feels the worry of getting shocked. We went on the search for a heart rate monitor so he could check it whenever he wants. We found one that doesn't need a chest strap (yuck). It is a watch and whenever he wants to check his heart rate he just holds two fingers on it for a few seconds. It is comforting to him to be able to check it. Now we joined the YMCA and he is using the exercise bike with the moving arms. The watch is called the "Mio" Sport. There is a website on the package www.miowatch.com but we bought ours at Big 5 for $70. His is just a basic watch and heart rate monitor. It doesn't have the calorie burning info and stuff.
I have been trying to encourage him to tell me what things he wants to do with his free time but he feels pretty down about the whole thing. At least right now with all the doctor appts we get out of the house alot. And whenever I want him to come out with me to do errands I use my feminine touch and lure him. :) And then reward him later. :) Comedy helps also.
My husband has been shocked 4 or 5 times...not too bad for having his unit for 10 years. He is seeing a counselor and is on antidepressants, but doesn't seem to be responding. Maybe I'M the one who needs the counseling and meds! :)
Feminine wiles don't work anymore, and quite frankly, after 10 years, it gets a little old. Plus, he doesn't even seem to be interested. It's also hard to be comedic when you get to the point that you hardly want to be in the same room with him. We've been married for 27 years, and for the first time in my life, I feel like we're not going to make it...
I hope I didn't upset you with my new-SCA-wife thoughts. I can't imagine what our situation will be like in 10 years. It is nice that you have this site so you can vent. :) You and your hubby will be in my prayers. I just found "The Gardener"s comics at the Stop Sarcoidoisis site. The Rabid Barking Lypmh Node. Funny stuff. I am going to show my husband the #5-8. I hope God sends a bit of joy to you today. :)
Hi Shamrock,
I feel so bad for you. I can't imagine how difficult it must be. I am the one that had the SCA and now have the defibrillator, but I truly believe the whole experience has been harder on my husband.
I know you were kind of joking, but have you considered the idea that maybe counseling really would help you? When a couple is having difficulties, sometimes even separate counseling can help. Maybe that could lead to couples counseling eventually. I have the impression your marriage was solid before this happened. I hope you can find a way to make it better.
Love, Mary
Hi Shamrock:
I'm sorry to hear your husband is still feel that way after 10 years. I'm sure it is very hard on your marriage. My father just had the ICD put in one month ago and is feeling the same way your husband is. My mother said it's very hard on her to. To seem him the way he is. He is trying to do things, but is very scared and does not sleep well at night, if at all. He is afraid to fall asleep at night, he sleeps better during the day when my mother is home. We all have suggested him going to talk to someone but we don't know if he will.
I think talking to someone is always a help. Would your husband even consider coming on this site? I've also told my dad about it but he is just stubborn, just for me I feel this a wonderful place to talk to people who are/have been the same situation.
Wishing you both the best, and hope your husband will talk to someone.
Donna (formydad)
HI SHAMROCK,
I RARELY RESPOND, BUT THE EMOTIONAL PART OF THIS TREATMENT, SOMEHOW ALWAYS CATCHES MY ATTENTION. MY WIFE & I CAN BOTH IDENTIFY WITH YOUR FEELINGS & DISAPPOINTMENTS. MY DEVICE WAS IMPLANTED IN SEPT,2006,& HAS TRIGGERED ON TWO (2) DIFFERENT OCCASSIONS, RESULTING IN TRIPS TO THE E.R. ( UNFORTUNATELY FOR US, IT OCCURRED BOTH TIMES, DURING SEXUAL CLIMAXES). IT HAS LEFT US BOTH WITH MANY FEARS & ANTICIPATIONS. WE ARE BOTH IN A SECOND- TIME- AROUND MARRIAGE ,& JUST RECENTLY CELEBRATED 6 YEARS.
I WILLNOW SHARE WITH YOU HOW WE'VE LEARNED TO DEAL WITH IT. FIRST, DON'T EVER GIVE UP!! IF YOU CAN'T FACE IT TOGETHER, THEN "YOU" MIGHT TRY A RIGOROUS RECOVERY PROCESS. IT IS OUR EXPERIENCE THAT THESE FEARS JUST DON'T DRIFT AWAY, THEY MUST BE MET HEAD-ON. WE BEGAN WITH INDIVIDUAL & THEN, COUPLES COUNSELING. WE BOTH ARE TAKING A MILD SEDATIVE. PRAYING DAILY FOR MYSELF, FOR COURAGE & ACCEPTANCE, HAS BECOME MY ROUTINE. ( NOTICE , I AM SPEAKING FOR MYSELF NOW, & NOT MY WIFE) IT REALLY HELPS TO SHARE THESE FEARS WITH THOSE THAT UNDERSTAND.
FOR THE MOST PART , WE LIVE FREE FROM OUR FEARS , ON A DAILY BASIS, WITH SOME SENSUAL ADJUSTMENTS. WE'VE LEARNED TO RESPECT THE PROCESS. IT CAN & HOPEFULLY WILL BECOME EASIER. GOD BLESS!!
I came to this website really hoping to find some spouses that are dealing with an ICD husband/wife. So far, the only spouse that has responded has had a 2 month experience, and for me, things have gotten harder to deal with as time goes on. Almost like it was easier in the beginning. One thing that is different in our situation is that my husband fortunately did not have SCA. He has an irregular heartbeat and is not a candidate for ablation. He has a wonderful electrophysiologist, but unfortunately, they can't really come up with a diagnosis for him. My husband has leads going into all 4 chambers of his heart. He seems to care about his health, but doesn't do anything about it as he is afraid that any physical activity will trigger an episode, and has subsequently become quite the couch potato. Our relationship has become more that we are like roommates, instead of husband and wife. Almost as if he doesn't care if he is a member of our family anymore. He is in counseling and on an antidepressant (along with the bazillion other meds that he has to take). Hopefully, that will help him before it's too late. I try to understand what he's going through, but it is getting very tough to be encouraging when encouragement hasn't done much so far. I have tried everything that I can think of to save this marriage and feel like I am on a downhill slide.
Reading all of your concerns/experiences is pretty tough and I feel I am just beginning my recovery after my 2nd SCA. An ICD recommendation has been made by some cardiologists. I am already feeling the slippery slope of "feeling down" and am very ambivalent about the ICD. I wish all of you more joy in your lives and appreciate the cardiac recovery pathway is fraught with challenges - it is very hard work and ongoing supports are limited. We all have one life to live and many of us are experiencing 2nd/3rd chances - there is a purpose for us all. Take care and keep moving!! We have all received tremendous gifts to continue the future but in our society it is very hard to see. Try to do one positive thing every day - even a smile for your partner/hug/looking @ pictures of family times etc do bring out more positive emotions. This is an incredible emotional journey in which we have the strength to move one. Have a better day.
Hi all, let me first start by saying that I was the one that had the SCA. The only 'recomendation' that came from my cardiologist about an ICD was that I was NOT leaving the hospital without one, period! (of course I could have refused but I am a nurse and my family is very much into the medical field so there was no alternative for us, it was the only smart choice) It is hard to believe that a cardiologist would recommend one after a SCA instead of insisting or just putting one in for precautionary reasons.
Bannya, please consider the ICD, that is the only protection. It is scary for us, even for me; I have been a cardiac nurse for 16 years! And yes, we are here for a reason.
I am one of those persons that can't be diagnosed with anything, as I understand it that is about 30% of us who survive a SCA. One of my daughters is being tested because she has v-tach as I did before my SCA her follow-up from her tilt-table is today. All of my Dr's told me I had neuro-cardiogenic syncope; this I know now is NOT my diagnosis. I was told I am physically healthy, go live life and enjoy it. There is nothing that can be done to stop an arrest if it going to happen and exercise does not induce an arrest. The ICD will know the difference between tachy due to exercise, v-tach and arrhythmias. Trust me they are totally different, start at different origins in the heart and look different on strips; if you ask your cardiologist to show you the difference he should be able to do so.
Shamrock,
Ok, I am a survivor not a spouse but I will send my hubby to the site later today to give his point of view.
It will be a year Oct. 23rd, so there again, not enough time. But please don't disregard what we are saying we don't mean to upset you but to give you our experiences. Everyone has a different experience with different reasons why they are depressed. This isn't from a spouse, and I am sorry you are going through this and having a hard time. I am not going to say it will be better.
At first I was like, there is nothing wrong with me, this changed quick and I was mad. I was depressed and angry and still am at times. I went to a therapist and was put on anti-depressants, thank GOD I had a reaction to the medicine! She always had me upset and depressed even more than before I went to see her. I changed therapists and the same thing. Then one day I was talking with a friend and she suggested that I go talk with someone and help someway so that I can get my story out there and help someone else. Not everyone knows what a SCA arrest is and some mistake it for a heart attack, which it is NOT!! Please, don't give up unless you have to. My Dad had his first heart attack when I was 6 with 3 bypass surgeries from then till he passed last year and trust me he was an angry man for years! I thought my Mom was going to hurt him sometimes!(LOL, not that it is funny but thinking of the way my mom would tell my dad to get off his rear and do something, this happened to her too and she wasn't throwing a pitty party! just flash backs sorry had to giggle) People react differently, and I am sure you have told him how you feel. I get angry with my hubby, just sit and do nothing and pout. But then I have 5 kids(teen girls!) at home and a job so I have to work and do all the stuff that a Mom does. Not to mention my Mom's voice playing in my head, and sometimes over the phone!
Please, go to a counselor and see if there is anything that they can help you with. They may be able to give you ideas on many areas to help get him motivated. Also you really need someone to talk with anyway. This has been a horrible life changing event that has happened to all of your family and I think the spouses are the most affected. Bless you for hanging in there! Hope things get better!
This is Tammy's husband Tim. Let me start by saying that I am very fortunate in a couple of ways. First that my wife survived SCA and second she is a wonderful woman. She was mad, depressed, and angry at first. She didn't understand what she had done to deserve what happened to her. It was also somewhat hard for her because she doesn't remember anything about the event itself. Her memory starts about a week after we got home from the hospital so it is a little hard for her to truly comprehend what really happened. All she knows about that period of time is what we have told her.
The hardest part for me was in the hospital after they brought her out of the coma and she couldn't make any new short term memory. Anything that happened more than 15 minutes earlier, she couldn't remember. Gradually her memory improved and within a few weeks was completely normal.
There have been adjustments because things are different. She doesn't have the same strength or stamina she had before - just making it through a full day is extremely exhausting for her. There are some things she just can't do. Fortunately, she wants to get out and live life the best she can so I am thankful for that. Sometimes, I forget about her limitations and put pressure on her to do things that she simply cant do. I just try to have patience and show her love and affection. She always responds to that.
I know there are days she cries and worries about her health and I worry at times too, but I try to just live each day for all that it is worth.
I don't really know what can make it better for you. For us, we both tried to talk to others which for us is better than holding all of the emotions in. Your husband may benefit from talking to other survivors. Talking with close friends and family was more helpful to us than professional counselors.
What helped both of us the most was to focus on the life we have to live for that day rather than being consumed by what had already happened or what might happen. We openly talk about the fact that we can't change the past and tomorrow only means something when it comes so the present moment is the only place we can truly live.
I will say a prayer for both of you. Best wishes.
Hi Tim and Tammy,
Tim's comments caught my attention because I felt like I could have been reading something my husband wrote. It's so interesting to hear everyone else's stories. I don't remember most of the week BEFORE the cardiac arrest. Did that happen to you, Tammy? I was in the hospital for 10 days and only remember the last few. Even those are a bit sketchy. Now I would say I'm pretty much back to normal, but my short term memory isn't as good as it used to be. I have to write myself notes ALL THE TIME. My family has gotten used to having to retell me stories sometimes because I forget conversations occasionally.
I work full time as a special ed teacher, so I"ve had to compensate. The people I work the most closely with know my short term memory can be a problem somtimes, so they make sure they double check with me, write things down instead of telling me, etc. They're great!!!
I'm sorry. I didn't mean to go off talking all about me. I just love to hear the comparisons.
You two sound really close. We are too.
Thanks for listening!!
Mary
Hi Shamrock,
I've been reading this thread for a while, feeling bad that I had nothing to add to give you some comfort. I often say my husband got the worst of the deal with my event and the aftermath.
I worked for years as and Adaptive Movement Specialist -- getting folks with various types of disabilities to move. Movement is essential for physical and mental health. I spent nearly 5 months on bed rest, so I have had just a taste of what your husband must be experiencing.
I have a suggestion. Check out Sit and Be Fit http://www.sitandbefit.org/ Mary Ann Wilson has put together wonderful programs to be done while seated. You husband should be able to wear a heart rate monitor and do the exercises -- gently at first. With repetition, our heart get used to motions and can do them with less effort. I think he'll find success quickly and feel better.
Mary Ann also demonstrates standing exercises along side some of the seated ones -- you could do them together!
I hope this helps -- in the mean time here is an e-hug for you (( ))
Eliz
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