Emotional support for the a-fib cargiver

I am new to this community. I don't know if this is the right site for me or not, but I do need some suggestions. My husband has a-fib (atypical) and had surgery to implant a combination pace maker/ventricular defibrillator. He has been dealing with a-fib issues for a number of years and I was able to handle it fine while I was working. Now that I'm retired, it's much harder for me to deal with the ups and downs and emotional swings my spouse now has. As a caregiver, I need emotional support and real world solutions to dealing with his issues in a positive way. I'm starting to feel trapped with no way out. I am much more active health-wise since my health is generally better than his. Let me know if this is the right forum for me, or if you can please direct me elsewhere. Thanks for your time.

19 Replies

  • Hi, I am Cindy and pretty new here too.

    People here will support you, and I believe Care Givers are welcome here. (No special page?)

    I am a patient. I KNOW what, "AT THE END OF YOUR ROPE" FEELS LIKE!!

    I do not know if I can give you the best advice , The Heart and Stroke people at the American Heart assoc. , do have excellent help for care givers.)

    I can "LISTEN" and let you have a new friend that cares...

    Can you leave him for a few hours? If so, LET YOURSELF off the chain you are on. Otherwise one day you may snap that chain like a Pit bull! (At the end of your rope - Never works well! If you are feeling trapped and desperate - Ask your doc about some antidepressants. Those feelings can be depression. I know. In your new role as care giver - You have every right to be depressed, you are kind of "stuck" with it and need to adjust and that takes time.

    Learn a new hobby? (most Knit& Crochet shops will teach you or have classes. You just buy the yarn or thread and needles or hooks to get started.) That is something you can take to Doctors Appt. It is VERY effective to STOP endless questions and get quiet time, so your brain can rest!

    My Mom used to say, "Hush, or I will miss a stich!" If we did not stop, she "Threatened us, with her Crochet hook

    Seriously - You have to carve out, "ME TIME", before you carve yourself or him! YOU ARE NOT THE PATIENT! You are entitled to your own time, Your own friends, doing whatever you find YOU like to do. (Not another man). You should enjoy your retirement, at least a little!! As long as he is not being abused, neglected, or left with out food, etc. You should get some space.

    Can he be left alone? Or do you have someone to help you, so you can get out for a bit? Even a neighbor, to warm up his supper, if you go to a movie with a friend?

    I would explain to him, being a "care provider" is tedious for you BOTH. That if you have a new hobby, (NOT HUBBY Tee-Hee!), that it will be more interesting for you BOTH.

    When you worked, you had a whole 8 hour day of things to talk about when you came home. Endless things, funny things or crazy work things, how your lunch was, and much more.

    Now, you are Retired and your life is: {{{ Doctors, picking up prescriptions, driving to doctors, and more!!}}} I am the patient and it drives me CRAZY! I have been a care provider for my husbands at times. Dr. Phil says, "NEVER marry someone - until you have seen them with the flu.)

    So how do you feel about: Bowling, Golf, Book Clubs, Bunco Parties, Avon REP? Get the Idea? Any Ideas??

    I had friends in their 80"s - Married 50 years! They barely spoke, it was "grunts and Yep, Nope". Neither of them had hobbies and depended on their adult children and grandchildren to fill their lives... Then, after they had visited, they had something to talk about.

    Tell your husband you will be a more interesting person and a better wife if you both have something to talk about - besides illness.

    Someone might even ask, ' How was your day, Honey?"

    Wow! I just wrote you a BOOK. Sorry.

    I do hope you feel you have found at least one new friend, and I had some humor to laugh at and maybe some support and Ideas you can use.

    Don't for get the AMERICAN HEART ASSOC. AND STROKE SUPPORT PEOPLE! I believe they even have a number to call - to just talk. Please consider Antidepressants. Trapped, At the end of your rope - IS NOT GOOD. (I did not get help until I had a "Nervous Break Down". Now called " PTSD".

    Love, Thoughts and Prayers to you,


  • What a wonderful long note, Cindy! It is SO appreciated. Why is it that men can't seem to understand that a life away from the spouse is essential for the mental health of both people? We both go to the gym and work out. I take a cardio class two days a week and yoga. It really helps. He does his own thing with weights, etc. I am on the fledgling guild of a fairly new symphony orchestra that gets me out of the house one night a month. Most of the time it's OK. The times when it is bad is like yesterday. There are deadlines to meet for getting the license tags renewed on the car and we are having trouble getting the emissions test done. Long story. the upshot is that a shouting match ensued yesterday, so I jumped in the car and went up to the DMV to get the particulars we need. Most of the time it isn't bad, but when he gets overly tired - look out! We went on a three-day trip up to Flagstaff. We live in Phoenix. On the way home that last day, he turned into a raging monster. I know it was because he wasn't feeling good and overly tired. He says he wants to go on a big trip, but I don't know how he can. I don't think he can keep with the pace. Maybe a river cruise where he can stay on the boat if he's too tired, but I will have others to hang with on shore excursions. Thanks for talking to me. It really does help.

    Thanks, New Friend!


  • Recommend a river cruise.!! Ideal as you choose how much to do.

  • Yay! We are on the same page there. We have had a great day today. Getting out of the house makes such a difference. I really think we have been spending way too much time at home. For the first 18 months it was OK as my job had been so stressful for the last 2 years of work. I ended up closing down an office and ended up in the hospital with chest pains. I didn't realize it was going to take me this long to get over all of that. I thought I would be better in a few weeks. So much harder and takes longer to heal when you are older! :(:(

  • Hi Karen

    It sounds like a bad combination! (Retired & Sick) retirement alone takes a lot of patience, throw tired and iratability into the pictured and it becomes a time bomb. Whoever said the retirement years are the best! I'm finding this stage of our lives to be the hardest so far. Lol

    Take care.....here if you want to talk just let me know.

  • Welcome to the group. I do understand when one partner is coming at life from a different angle from the other. I would agree that once retired you seem to have more time to get embroiled in things and dare I say more irritated. You don't say if your husband can manage on his own or whether the situation with you as caregiver has brought with it an expectation that you are there most of the time. I agree with Cindy that you need your own protected time. If you are loth to leave your OH you may find your local Age UK could offer a companion for your husband for a couple of hours.

    If your issues are more around the fact that he is constantly there with his ups and downs and health problems then maybe some of the strategies we with AF use may also help you. I am thinking of relaxation, mindfulness meditation maybe yoga or Pilates, all of which create space in your head.

    Living with your changes in your husband is very similar to living with a chronic illness like AF. We are all learning to manage a changed rather unpredictable situation. Please stay I'm sure we can help with insights into how it is for us. Best wishes Wendy b

  • Thanks, Wendy. No, he isn't incapacitated. He can fend for himself quite well without me. He still mows the yard, does errands, takes care of the car, so it isn't that bad. I do have my gym time three days a week and I took up adult coloring about a year ago, which I really enjoy! My husband was a cop for 20 years and then in the tech industry for another 8. Most of our time was spent apart, to not much time for fighting! LOL! For the most part, we do pretty well. There are just days when it's too much (like yesterday). Thank God those days don't happen that often. I do have time to myself every afternoon as he naps for 1 - 2 hours, depending on how tired he is. He isn't in a-fib all the time. He's on a medicine that helps regulate the heartbeat, so there are days when he feels just great. I was so tired for a long time after retiring, that I was glad to stay home and not do much. Now, 18 months later, that's a different story. We used to go on long bike rides all the time. He can't do that anymore. He's physically active, but he doesn't have the energy he used to, so now it's much harder. Just being able to talk to you nice people helps a lot!

    Thanks! Karen

  • As others have already said, this is a general forum for all affected by AF. At a conference a few years ago I was facilitating a group subject discussion on "How does AF Affect Me" and noticing one chap sitting quietly asked him how AF Affected him. He was very embarrassed and said that he didn't have AF it was his wife who did and he was just there to support her. I repeated my question and suddenly a whole new picture emerged. There are several spouses who post here, sometimes because their counterparts do not feel able to discuss their condition and more often because "they don't do that internet stuff" so you should meet some fellow travellers.

    I can't offer any insights into how they cope I'm afraid and it would be wrong of me to bring my perspective to the table. My wife is a professional carer ( I joke she is getting in practise for when I am drooling in a chair) but I can tell you that her coping strategy is to dump it onto me each evening over a glass of wine on the terrace. Since I did this to her for most of my working life it only seem fair. lol.

    I would say that couples often do not talk enough about their relationship so please don't be afraid to tell him how you feel. During my early AF journey I made a film for a drug company about my story and whilst I played ,me my wife was played by an actress who interviewed her for her own feelings. It was only when I saw the film that I truly understood the impact the whole thing was having on her and after the usual floods of tears we worked together not to have such miss-understandings again.

    I'm not sure where in the world you are but here in UK there are a number of both support and social groups for AF and ICD users who meet from time to time so it is worth asking.

    Good luck and do ask any questions which may help you.


  • Thanks, Bob. I appreciate your response. I think that one of the biggest problems we have is that the majority of people are so honed in on the patients that the caregivers are left behind. A couple of years ago, I talked to a friend who was going through cancer issues with her husband. I asked her how she was doing. Her response: "Do you know? You are the only person who has asked me that." I'm glad that you and your wife are communicating on a positive level. For the most part, we do, but there are days (like yesterday!) which are just harder. It helps to talk to others who know about the issues and can offer advice. BTW - we live in Phoenix AZ, so a long way from the UK!

    Thanks for your Support!


  • Oh I do understand. Karen. I'm five years post successful prostate cancer surgery so poor Sam has had more than her fair share of worries. All I can do is support her in anyway I can and recently persuaded her to live dangerously and buy herself a Ford Fiesta ST for her 60th birthday. Its is the most powerful and sporty of the small hatch Fords and much to her delight is quicker than my BMW! With fifty years in motor sport behind me it was the least I could do. ha ha.

  • That's awesome! What a great thing to do! :):)

  • Dear Friends,

    Thank you for being so supportive. It is hard to have to be cared for, but it is also hard to be a carer. I'm so glad that we can be supportive to people on both sides of the equation.

  • You do not say which country you are in.Quite important for us to know..... 'help' might vary from 'finding space for yourself to getting some professional help so that you keep bouyant and emotionally 'well' in as far as your circumstances permit.Many people here are in the UK.There are one or two things here that might help.

  • Yep, I'm in the US, living in Phoenix AZ. A long way from the UK! Nice to have some chats with people on the other side of the pond! Today is a much better day. I will take Cindy's advice and call the Heart Association. Some days you just need another human being to talk to.

    Thanks for your help! :):)


  • Sorry to hear this because it sounds difficult for you both, at times, to see the glass as half full. If there are emotional lows, there are better times too.

    It's nice to make a point a) of doing something pleasant together on a regular basis, like going out for lunch every so often or to have the goal of a specific walk on a suitable day, like along the whole of a canal bit by bit. My other half walks much more slowly than I do but we enjoy canal strolling together. And b) not doing things together. My husband is learning a foreign language with a small group. I don't particularly recommend this as I can't understand more than a word or two of what's said or written.

    Try getting a treadmill and sort out any venom that creeps into your life by setting it fast on max elevation. With a TV in front of it you can be at home but mentally elsewhere with music and DVDs of nice views of beaches and walks through cities. Or games on an ipad. Legs, cardiovasculars and brain all on the go.

  • Thanks! I have a gym membership and work hard! That really helps get the demons out. I certainly feel much better when I'm done! :):) Karen

  • Bobs comments are spot on. If you could persuade your husband to look on this forum from time to time, maybe with your help to start with, he may off load some of his problems onto us leaving you with a little less emotional support to give. My husband takes ages to agree to a new idea but if I dripfeed it for a while he thinks he has thought of it himself. He is a celiac and I have been going on the celiac forum for ages to find out best places to eat etc then the other day he said" so how do I get on the forum? " and hey presto he is now on it regularly. Good luck. X

  • You are right about the drip feed! That does work! It isn't really that bad most of the time, but there are days when it's difficult. I try to be patient, mainly because I love him, but I also...sorry gotta go.

  • All is much better today. Glad to get out of the house for a few hours. We had some things to do around the valley. It's much better when we our out doing things. It really does help!

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