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Life with a survivor

wdiane
3 Recommendations

My husband experienced a sudden cardiac arrest on May 2. He was saved by people who administered CPR to him immediately and the paramedics who shocked him. After spending a month in the hospital he is now home. He also had an ICD implanted. We had a cardiologist appointment yesterday and he is doing great. At first I was in shock that this could happen! How could my healthy husband have heart problems? I felt like my heart was breaking. Now he is home I am scared to have him do anything for fear of losing him. I still poke him at night to make sure that he is alive. He has been my best friend and lover for over 41 years and the thought of losing him is unbearable for me. I am a clinical social worker so I find it very odd to be having these thoughts. I am not used to being on this side of the fence! The first time he gets back on his bike I know I will be terrified. I would like to get some feedback from other family members and how they have handled this.

Explore topics in this discussion:

Cancer Surgery Sudden cardiac arrest Stroke Anxiety Heart attack Memory Insomnia Depression Stress

35 replies

wdiane

Jackie, You have come to the right place to receive support! This community is where I turned when my husband had his arrest back in May. I too would not let my husband out of my eyesight but now I am so it will get better.
Diane

wdiane

Well, I did not go to Chicago but stayed in Kokomo! A virus that is going around got ahold of me and would not let go. I have the week home in bed. Hopfully, I will be able to go back to work on Monday. It grieved me that I was unable to go to Chicago-I had looked forward to it since August! But there will a next year and I am planning to be there!
Diane

Jackie34

Thank you so much for your kind words, Bob! My story is so much better than many of those that I have read. My husband is amazing! I know that we have a lot of changes to make, but he is up for it. He wants to survive not only for himself, but for all of us who love him.

I feel for you and your wife. What a thing to go through! You seem very encouraging and grateful and I am sure that your wife appreciates that.

I am so blessed with the marriage that I have. I wouldn't trade it with any other couple that I know. Even though I am scared of losing my husband, I feel grateful for the time that we have had together!

Now if I could just get rid of this darn insomnia! As usual the rest of the house is asleep and even while extremely tired, I can't sleep! Thanks to your post I think that tonight instead of thinking of all that could have happened, I will remember all of our good times and think ahead to our wonderful future!

I hope you and your family are blessed with many wonderful times in the future!

Thank you!

Jackie

maureengraz

Have a great time in Chicago!

Jackie34

My husband suffered a heart attack 2 weeks ago. I was drying my hair and my 2 year old came into the bathroom, crying "Mommy, Mommy! Daddy's sick!" I ran into the living room to see him on the floor, his face grey. My husband is a doctor and had a sample of nitroglycerin in the home. He took a couple of sprays. I called 911. While I was waiting, I was trying to comfort my husband, my baby and going over the correct method for CPR if I needed to use it. When the paramedics loaded him into the squad, my daughter cried to ride with Daddy. I told her that we would see him at the hospital. All of the way there I wondered if that were true. I imagined them shocking him back to life in the back of the squad.

When we arrived at our local hospital we learned that he had indeed suffered a heart attack and it was still progressing. The helicopter was sent to take him to a hospital specializing in cardiac care. My daughter and I had to kiss him good-bye (one last time?) before he was flown away. I rushed to get to the hospital but was told that no matter how fast I drove, my husband would be in the cath lab before I arrived.

When I got to the next hospital, I was terrified to ask the receptionist where I could find him. Would he be alive? She sent me to the correct waiting area and I was assured that he was in the cath lab. After another 20 minutes of waiting, I was allowed to see him. He was talking and looked great. I was told that the blockage he suffered takes about 80% of the lives it affects. The widow maker is it's nickname.

My problem is how I feel now. I can't sleep and I find myself crying just out of the blue. Today I imagined what my life would be like right now if he had not survived that event 2 weeks ago. I don't know how I would survive. My baby loves her daddy so much! I can't stand the thought of him dying before she is old enough to even remember how much he loves her.

Now I feel like I have to check on him all of the time. I don't even let him lock the bathroom door. I am not the calmest person in the world and I get angry sometimes. I feel like I can't address any problems with him because I might cause him stress.

I hate that anyone else is going through this right now, but it is helpful to know I am not the only one!

wdiane

Yessterday, was the Heart Walk. It was cold and rainy(not a good comb for a walk as far as I am concerned!). Steve did well-actually better than me. I spoke and Steve cut the ribbon and then we walked and then we came home. Lots of comments about the bill board. This week we are off to Chicago!
Diane

wdiane

Well, the billboards are up!! So I see Steve's smiling face two time on my way to work every morning. It is so odd to see him up on a billboard! Tomorrow is the Heart Walk and they are predicting rain. Hope it will be early or late-nothing like a downpour to make a walk miserable. I have 3 minutes to tell Steve's story! Then next week we head to Chicago for the conference. Wish all of you could be there! What a time we would have! Hope everyone is doing good!
Diane

PAULAK

I agree with Diane,
I don't think Bogey was wrong in what he said. I have a father suffering through this and I myself have a rare form of cancer where there is no treatment. I, thankfully, have an incredibly supportive husband but they always so "an illness will either make or break a marriage"...some, unfortunately just don't make it for various reasons. As someone who is still fairly young (48 now - diagnosed with an orphan cancer at 38 for which their is no treatment- nothing!) and knowing I have an incurable cancer I truly think Bogey was correct in what he expresses. I know how hard it is for the caregiver - I'm one for my father - but when you have a life changing event like that happen to you - I don't think you understand how difficult and actually how guilty you feel about it. Everyday, everyone asks me how I am feeling, am I doing better, you look pretty so you must feel ok - even ALL my oncologist and cardiologist say that - and do you understand how much pressure that puts on a patient if they aren't feeling better, if they haven't made progress from the day before, I feel like I'm letting everyone down because I'm not winning my battle with cancer - to see everyone's face fall when I saw I don't feel well or to see them roll their eyes - mine also affects my heart and I'm a heart attack or stroke waiting to happen as my Drs tell me. It's to the point that I just smile and say "I'm fine" because, really nobody wants to hear that I feel like crap and would give anything to have my former life back. I was a type A personality who worked in the medical field for 20+ years -- now I'm at home, can't leave the house and usually in bed 5-6 days a week, but I "look" good so I must "feel good"...........Bogey wasn't implying anything wrong, so I don't understand that reply either. I do as he does, I try to look for something good everyday in life, smile at anyone I see, wave to the UPS man and say Hi. I think Diane was correct - that response crossed into personal zone and no one can live in anyon's life but their own, nor past judgement on how anybody else is surviving. Yes, we as caregivers need just as much support as the person who is ill. We must take it upon ourself to seek help and take care of yourself and tell others when you need help. I'm both - a caregiver and a patient. It's honestly the same for all of us. We, as a patient, have so much guilt towards our loved ones when we aren't as well as they wish we were. We feel like we are letting them down. So, go out Bogie and golf, play with your grandkids and have fun with your dog. We all never know when life will end and it's not worth the time to criticize anyone for how they've made it through a horrible ordeal.

Mary1

Diane,
I don't think that could have been said more beautifully. Thank you for putting that out there.
Mary :-)

wdiane

I am wondering if we all don't need to take a step back and take a deep breath. For some reason this discussion has appeared to veer towards the personal. We are all survivors-whether we are the spouse or loved one or the one who experienced the SCA. And we all handle this eperience differently- and whatever that way is it is the right way for that person. All of us need to be able to express our feelings and recieve validation for that. The way that my husband and I have chosen to deal with this is to become involved and to "pay it forward". We were so touched by the many people who provided care for him and did truly save his life. I am fortunate that I still have the same man, as before the event , with a little forgetfulness, a shortness of breath, and no stamina. It has been hard for my "superman" who thought he was invincible to realize that he is not and that life going forward is going to look a whole lot different. But we are in in together. Together we are truly b etter!
My heart goes out those whose experiences are not like mine. But we have to remember that we have all walked down a similiar path and while we do not know each others details we do know the experience.
Sorry I got on my therapists hat there for awhile but it is hearfelt.
Diane

Maridee

Dan,
I personally know Janee and know that she is one of the kindest, most giving, most compassionate people in the world. She spends her entire days and nights working tirelessly taking care of others; her aged mother, her daughter with adult onset disabilty, others like her daughter with the same disabilty AND her husband. So many people depend on her that her needs are at the bottom of the list if there at all.

In reading all the posts I know what she is saying and I know she was not trying to knock you down or what you do for others. What she and I have said before is that the survivor usually takes care of himself (I will use the male gender as she and I have husbands as survivors) first and foremost. Gone forever is the man who looked after us. Gone is the man who put our needs equal to his needs. Gone is the man who used to make us feel protected and sheltered. Gone is the husband we used to have.

And no one seems to care about us. We are the ones out there picking up the pieces of the lives that were shattered. We are the ones dealing with the day to day stress of trying to find quality healthcare for our spouse now that he can no longer work or get it. We are the ones dealing with our family issues (our grown children and their own problems). We are the ones who no longer know what the future holds for us since the man we were married to is gone. A new man takes his place and we are trying to figure it all out in addition to everything else.

Believe me I cannot imagine what it must be like to wake up from this dream to find out what happened to you. I know firsthand that my husband never, ever expected this for him. No warning at all. It has to change one's outlook on life forever. Yes it is now time to look at life differently and recognize you were given a 2nd chance at life. And that is the way it should be. But after all is said and done some of us are so exhausted at the end of the day that the only time we get to stop and smell the roses is if our husband brings them to us. And for some of us, that is gone forever.

Bogey

Janee
I sat here and wonder why YOU would say things like that to a person you don't even know. I hope your not as much as an unhappy person as how you sound in your posts cause if you are I feel sorry for you and your husband. All I was trying to say is that I'm am looking at life alot different now then before. Oh and what do I do for others? Well I watched my grandson while my daughter inlaw was in the hospital for a week, helped my son inlaw cut split and stack firewood for the winter. I go and visit my mother and father in a nursing home every two weeks. I take care of myself and my dog everyday cause no one else lives here. I guess I try to make someone smile every day with upbeat things to say to them. I'm not saying this to you but for myself, the best thing that ever happend to me since my SCA was the day my ex wife walked out the door. Just having her doom and gloom attiude living here was my problem and I am a happier man that she is gone. Oh for loving part of the marriage, she was the one that moved out of the bed room into another room in the house and didn't want me to touch her. Come to find out she was seeing another man. So don't try to knock me down before you get to know me janee and what I have been through. All I was trying to say is look at life a little differently and maybe put some joy in your life and you might enjoy it.

janee

Bogey,

Good for you out playing golf, hunting, and doing all those things YOU love. My husband is out doing the same thing! One question, what are you out doing for others?

I don't think any of us have time for the pity parties you speak of--we are out there taking care of our families! I am sorry that you were not able to understand how your ex-wife felt after the trauma she went through and EMPATHIZE with her. My Dad died during the first year of my husband's survival. He couldn't understand why I was crying, so I asked him to just pat me. He did, about three times--where did that great guy go who would have helped me get through this sad time in my life?

And boy to I understand we are on our own if we get sick--god forbid that you should miss your scheduled golf game!

Here's to all the spouses out there dealing with these personality changes and trying to make the best of living with this stranger who used to be your loving, caring spouse.

And please survivors, I do understand that this does not apply to all of you. Just try to understand what the spouse or families have been through.

Bogey

I am a survivor of SCA and am alive and well. Oh gawd did I hear of the personality changes. Yes I was in deep depression. I woke up in the hospital and didn't know what happened and told I was a lucky man to be alive. Then I was told that I would never drive truck again, with that my lively hood just went out the window. Then all the doctor visits, told that one of the leads not working well and would have to back into surgery and have it replaced. Then there was the over protective spouse that didn't want me to do anything that would efect me and then complained that I didn't want to get better..... hmmmmmmmm
Oh yes then the day she came home and said she wanted a divorce cause I couldn't afford her anymore, this was just eight months after my SCA. Well that was two years ago and she is gone (Thank God) married to a man that can take care of her now. The way I look at it she was just thinking of herself and I'm better off without her. Oh yes we survivors are different, we look at life as a gift now. I didn't go and buy things to feel younger or get a tatoo or chase women. I do take time to enjoy the things I like, golf, fishing, hunting, raising a garden, watching the sun raise and set. The things that are different in me is I don't let the little things bother me anymore, as I was told, if it don't matter in hundred years from now why worry about it. Life is to short to sit around in a pitty party and say wooo is me, there is a life to live and make every minute count cause you don't know when the ole ticker is going to shut down. I think that everyone should look at life this way, not just the survivors, cause you never know that you might be the next one. Well I'm off to smell the roses and smell the fresh mown grass on the golf course. Have a nice day and God bless you ..... Dan

haveaheart

Janee, you probably saw my post above. I, too, am broken"heart"ed. It is so hard to stand by and watch. I tried for a long time, justifying that he was sick, but when I got the flu, he could have cared less and I realized he was not there emotionally anymore. When I started taking part of my life back, he said I didn't care about him anymore, and started looking for other women. He has since moved in with one. My ex-husband now, never lied to me in 20 years...but after his SCA it was all lies. A very sad ending. I still shake my head and wonder what happened.

You are not alone, but we need support - a lot of it. Maybe some survivors can give us some clue why this happens and what we can do about it?

wdiane

Janee,
I completly understand where you are coming from. I want you to feel validated. Thank goodness we are not all the same! I have found my passion in life by woriking with the SCAA and trying to make it possible for others to not have to go through what i did or what Steve did. Fortunately, for me I still have the same man-give or take some forgetfulness and other minor issues. Please beleive me that I can understand how you must be so tired of all of this. I would be too if I was in your shoes. Do you have anyone you can talk to about this. I know it is hard to find someone who can relate to all you have been through. Just because this is the right way for me does not make it right for anyone else.
LOve and prayers
Diane

janee

Sorry wdiane. I don't want a picture of my husband on a billboard encouraging cpr or people carrying aeds of any kind in the field.

Living with a husband who is no longer "my husband" due to personality changes from his SCD is not my idea of having fun. Maybe you should wait a year before you continue your project. My first year after my husband's SCD was spent from appt to appt to help him get better, my second year was spent trying to get myself straightened out from PTSD and learning to sleep without sleeping aids, my third year was spent debating whether I could spend the rest of my life with this man who is "no longer my husband" but a very young teenager and the very ego-centric part that goes along with that age group. We are in our 5th year now and I am just plain tired.

We all need to consider when natural death does come, is our health care taking it too far!

And for those of you who are at the other end and are survivors, my apologies please. It is just that my life has changed so dramatically having this young teenager and keeping him out of trouble that I am exhausted, as are many other survivors' spouses. I also would love to have someone validate my feelings and struggles--there are no aeds for us. Janee

wdiane

I hope this finds everyone doing well. Steve is having some problems with getting his breath and his stamina and also his blood pressure is very erratic. So we are going Monday to have a stress echo and a tilt table test done. Steve is sure that these tests will provide the answer but I am a little concerned about them. At least he will be at the hospital if anything goes wrong! I trust the Dr. but I guess it is once again giving up control. The Dr said that it might be his ICD and the setting it is on. Things are going well with getting the Hoosier State chapter up and running. I am having a meeting with the dept. heads at the hospital next week. They have jumpted in with both feet. Also Steve will up on a billboard in October! He actually looks good. There is a print campaign going on at the same time which features him as well as the website. Once it is up I will send you a link.
Diane

Maridee

Haveaheart,

Thank you for sharing your feelings with me. When you spoke of the personality change it was almost ditto for me except he hasn't done the bar scene, bought a convertible or gotten a tattoo. He does act like a teenager in his driving skills and I constantly have to remind him that he is doing just that!

I am sorry that your marriage didn't survive the SCA but you are correct in saying that you got divorced from someone you didn't know. I have told friends that I am now married to a new man---and I need to get used to it!

Best of luck to you. There are many raw, emotional feelings on this topic and only those of us who are living through it can honestly say, "I know exactly what you feel and what you are going through."

Maridee

haveaheart

Laura and Maridee,

Beware of worrying. Here's my story.

It's been almost 2 years since my husband's SCA. After his SCA, he had two incidents of "passing out." All three incidents were 911 calls, with me administering CPR. I can honestly say I have never been so scared in my life. I was trembling so hard I could barely dial 911. My ex-husband's response? "Next time, don't call 911."

I, too, would lay next to him at night and wake up several times to make sure he was breathing. If I was doing something in the other room, and didn't hear him for a minute, I would call out and ask if he was okay. He got irritated...I guess it didn't make him feel macho or sexy - and that I was being like a mother. Still, when I hear an ambulance siren, I hope it is not coming for him.

After the SCA, he had a drastic personality change - he just wanted to have fun. It is like he reverted back to his 20s (he is 60) - he got into the bar scene, bought a convertible, got a tattoo and asked me if I had ever seen a 60-year-old man that looked as good as him.

While I was worrying, he left me - first, emotionally, and then physically.

Our 20-year relationship completely deteriorated and we got divorced. The funny thing is I got divorced from someone I didn't even know.

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