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Spouses Coping with Personality Changes

terriwinget
0 Recommendations

Thank you Suuz for suggesting a new "sub-topic" for "Wives at the Scene..." What a great idea! Believe me, if I would have see this topic before - I would have pounced on it months ago.

It seems many of us are dealing with the challenges of personality changes that our spouses have undergone after SCA. If any of you are like me (which it sure does seem like lots of you are), it's something that is very difficult to admit and talk about. I have told myself countless times "You should just be grateful that he's alive." In fact, I have kept these challenges to myself for many months, in fear of sounding ungrateful that my husband is still alive. I have come to realize that it is something very real that many of us are facing and the support we can provide to each other in "coming out" will help us through this rollercoaster.

I know that we all love our spouses very much and don't wish to come on to "bash" them, but I know from my experience lately (coming out of denial), that talking and writing about it has helped me to laugh & feel very comforted.

Suuz, in response to your post at "Wives at the Scene..." I really appreciate your input and perspective, especially the part about no longer hoping and praying that things will go back to the way they were. When I look at it that way, it gives me insight to move forward with what I have and that maybe I should not spend so much time looking back.

The lack of motivation, empathy towards others, kindness, understanding, patience, excitement and judgment have been the biggest challenges for me and my situation. John used to have an abundance all of those qualities, but they have disappeared.

What makes it even more challenging is that he does not express his feelings or struggles, even when I try really hard to make him talk about it. He says that everything is fine and he doesn't notice that he is different. A part of me says that he can't help it, but the other part says he NEEDS to help it. Do any of your spouses talk about it or shed light on what they are feeling?

I hope that by starting this topic, it will help others to know they (you) are not alone.

P.S. Could we share what states we live in?

I am in Marysville, WA

We should have an Inspire convention so we could all meet each other!

Thanks everyone,
Terri

Explore topics in this discussion:

Exercise High cholesterol Surgery Counseling Bypass surgery Lactulose Stress Xanax Heart disease Stroke Seizures Physical therapy Suicide Pain Heart attack Memory Heartburn Speech therapy Depression

44 replies

hanginginthere

Hi, Caribetty. I am very sorry to hear about what has happened. I am 40, also. My husband is in his mid 40's. We have gone through counseling to help deal with the changes that have occurred. I think it is important that you remember to find ways to be happy as you. It is very hard on caregivers and it is important that you take care of yourself. Maybe there is a support group that could help you with an outlet. Maybe there is a hobby that you could enjoy and if you can't leave your husband alone maybe one of his friends could come by for a little while you go enjoy what it is that you enjoy - reading, exercise (I have found a love for Pilates), photography. As others find that they can still enjoy his company it might open your circle. Maybe if someone in his family lives close you could ask them to come by? Keep joining the conversation and good luck. I will be praying for you!

Crystalsky

When I miss my husband the most, I remember these posts and realize that even if he'd lived, he and my life would have been changed forever anyway. I may even be luckier in the fact that I can move on some day, and many of you have to live this out with your changed loved ones. I feel my pain decreasing slightly every day. I wish you all strength and peace...

caribetty

Good evening to all,

I am glad I found this site. I have felt so lonely the past year and a half. My husband had a hemmoragic stroke Aug 2007. He suffered loss of left side arm and leg use. He is able to walk with assistance of cane now. He also has cognitive issues. The worst part for me is the change in personality. I feel fortunate that he is not an angry person at all. I am so sorry to all of you who live with that. he is the opposite. He is so sweet, much sweeter than he was before. He cries when he becomes emotional, totally out of his character before. He basically is at the emotional level of a 10 year old. Some times I will see a glimmer of the way he used to be, but it is very brief.
The first year we were so busy getting ready for him to come home from the hospital and rehab, getting him to rehab appts, customizing our lives. Then the past 7 months, we shut down our business we ran together, I changed direction in my totally and we moved to a new house that was much easier to manage.
In the past few months as things are slowing down for us and not being as busy, I have felt the most lonely. I miss my husband so much. it is hard to vocalize to people that my husband died, but he is still here, without sounding like an ungrateful wife to those who lost their spouses, or to those who just don't understand.
I am only 40, he is 56. I am the only one that can take care of him, he cannot take care of himself. His family doesn't even call. We have been married for 10 years. I do not want to leave, I just want someone to talk to about it. My family just tells me how proud they are of me, they really do not want to know.
I am the most sad for the times that I cry and he cannot even tell I am crying. He does tell me he loves me, and I tell him all the time that i love him.
I miss my husband soooooooo much.
I even find myself calling him by a different version of his name........ guess that must be a subconscious thing.
I look forward to chatting with someone in my same situation.
Thanks for listening

Maridee

Karey,

When I read your story the tears started to flow. You have shared a very personal experience with us and we understand exactly what was written and unwritten. The outcome of your husband is what I was told would be my husband's. He though fared better.

My mother had a stroke which left her paralyzed. I took care of her daily. I bathed, fed, turned her, put her in her lift because I had to help my father. When my husband had his SCA and was down 8 minutes, my first real thought after they saved him was please, please, let him be able to transfer. When that was acheived I prayed that he would have at least the personality of a 5 year old so he could play with our grandson down the street. No one knows what the spouse goes through in a situation like this. To verbalize our feelings seems so inhumane, and yet it is the truth.

The one thing all of us have in common is that our lives were forever changed on the day our spouse, loved one or ourself suffered a cardiac arrest. My husband will never be the same man I married 35 years ago. Different- yes, same-no. The world doesn't fully understand our feelings. My daughters say "you should just be glad he survived". I want to say to them, "I am, I just want you to know that the man I married is gone and I am trying to learn how this new man works!"

My heart goes out to you. You have voiced what many of us have thought many times. The best we can do is give it our best and pray that others will have compassion on us and allow us to share those most intimate thoughts and feelings without judging us.

I am praying for you and your family.
Maridee

Mary1

Hello Karey,
I just wanted to say that I'm proud of you for saying what you need to say, here on this forum. I know other people don't tend to understand, but definitely the people here do, and it's so important to deal with all of those feelings and thoughts.
"Hanging in There" - I had to chuckle a little when you commented about your husband remembering things you DIDN'T say. It's almost a family joke for us that I sometimes remember things that DIDN'T happen better than things that really did! I'm glad you are "hanging in there." I know it's hard.
Love, Mary

hanginginthere

Hi, Karey. I am so sorry for what you are living with. My husband was 43 and we have two small children. What you are feeling is very normal. When my husband was in ICU and the first hours were ticking by, I was told the varying degrees with which he could "live". I was told that at the end of 72 hours we would know what type of long term prognosis there was. I was not sure if I should pray that God not allow him to suffer for the rest of his life and take him or pray for him to live at any outcome. I could not believe I could even think on those terms and I truly believe that many people have no idea what this means to the spouse and family. My in-laws were off trying to figure out what rights they would have in any decision making process during those crucial hours yet I don't think they would have helped at all if we ended up in a rehabiliation center or long term care center. I think I would feel overwhelmed and lonely. I know that I am lucky that my husband can live so well, but it does not escape me that I could easily be walking in your shoes. I hope you can find some support through a counselor, clergy or others that are here standing next to you. My prayers are with you.

Sherri,

Thank you for your words. It is after hearing what you have to say that I can laugh (inside) when we go through the memory issues. My husband argues about things that he supposedly remembers correctly (what I have said, for example) and yet the next minute says he can't remember something because he has memory issues from his heart attack. I try (and I am not always successful) to take a deep breath and be patient but some days it is all I can take. And I know this sounds small to others but this is one of the multitude of new things I deal with in my "new" husband. I love him but boy it is like dating all over with the marriage thing already here. :)

Thank you to all of my new friends that make it so much easier to take that deep breath and know that I am not alone.

KareyH

Hi Sherri,
I'm just now reading your email and I instantly burst into tears. My husband suffered his SCD on 12/26/2007. The Paramedics, doctors, surgery, etc.."saved him", they brought him back to life 4 separate times. He was without oxygen for 9 minutes and therefore suffered a traumatic brain injury.Since that time he was hospitalized in several traditional hospitals, 2 rehab hospitals, and two specialty hospitals and is now currently residing in a nursing home. He will remain there for the rest of his life; he is 45 years old.
For all intents & purposes, my husband died 12/26/07. The man/person/body that remains today is not my husband. Although he recognizes me (I can tell by the way he lights up when I come in the room), he does not truly comprehend his situation or environment. He is not able to feed or bathe himself, he is often agitated and aggressive.
I've had many people say the same thing to me, "Well, at least he's still alive"....
What people don't know is, that this is a living nightmare. I can't help thinking that my husband, and me, would be better off if he had died that night. But those thoughts make me feel so guilty and selfish. I can't share those thoughts with others, it seems too ghoulish!
I haven't really shared these feelings before and I hesitate to post such negative feelings. I love my husband very much and continue to mourn what we had and what could have been, but how much is a person supposed to take!
Thanks for saying what I couldn't verbalize.
Karey

sueque1208

HI Hanging in there,

Your post sounds very familiar to my sitiuation. Of all the post I have read. Overall I feel very blessed with my husbands recovery form a very serious and life threatening ordeal. His personality has changed, but several weeks ago I really called him out on his snipity behaviour and that has improved. But the memory thing can sometimes drive me nuts. He accuses me of moving things and rearranging things, without telling him. When waht he is looking for has been in the same place prior to his heart attack. His memory seems to want to regress to the way things were arranged 10 + years ago. But all things considered I do feel blessed daily that I still have him in my life. He was only 51 when he had all his problems.
Susie

hanginginthere

I want to thank all of you for the information you have posted. My husband had an SCA almost 7 months ago. My husband had been playing basketball and collapsed. I arrived at the hospital to find my athletic, energetic husband unconscious and medically unstable. They opened the 100% blockage in the LAD, worked to resolve the seizures, and put him in hyperthermia. It was the most awful night of my life. I was surrounded by the most wonderful family and friends. We prayed and at the doctors recommendation we had Hope. When he was removed from the ventilator and was moving out of ICU, the neurologist was very impressed with the progress that had been made. There was a wide range of possible outcomes and I was trying to be prepared for any of them. My husband had some serious short term memory issues but was able to carry on a conversation (difficult to understand) and recognize the many wonderful people who came to visit. The neurologist was pleased but said "he might be a little different but others will probably not notice" . At the time I was trying to work through the immediate issues and I was so thankful for what God was giving me - my husband.

I am so thankful for this site. It took a long time to find it but it is such a relief even now. SCA and ABI can be a very long and lonely process. Although we are supported by many around us, the private matters can be the most difficult. Luckily our friends have been very supportive and we joke about some of the changes that have occurred. My husband is just a different person - quieter, more self focused, forgetful, and just different. There is this sense of depression - from what I understand all men who suffer a serious cardiac event in the their 40's suffer signs of depression - that I know will take time to resolve (we are working with someone). It is like being married to a new person. I tried to explain to someone that luckily it is not as bad as some of the situations I have seen discussed here but it is someone new. I knew how my husband would react for the first 15 years of our marriage - now the rules have changed. Not bad rules - they are just different. I pray every day that I will be patient and accept that we have a long road of recovery ahead of us (they say two years to resolve many of the issues). I try to remember that, yes, he does have short term memory loss even though he thinks it is getting better. With a smile - you can't remember what you have forgotten (FIVE TIMES)... We have tools - the dry erase board with the schedule for the weekend. But overall we are blessed - he can work, be a wonderful friend and live a pretty normal life. Thank you to all of you who have shared your stories so I know that what I am working through is normal. I pray for those of you who are really challenged and may you find hope for the future. And I welcome anyone who would like to talk more.

Macey

Hi Terri,

Thank you for your reply and friend request, like i said to maridee, its so good to know that i am not going crazy, even though there is still a little part of me that thinks i may still be! Yip you were quite right to add guilt to our list, GGHAF it is then...!!! :D I have been working loads so havent really had time to come on here, but i am off tomorrow so im up a little later tonight! he is sleeping on the sofa just now and i have left him there because i am glad to have the bed to myself, i have left the heating on to ensure that he doesnt get cold and waken up! I know that sounds bad.. but i dont like it when he comes to bed because i never know what way i am going to get him.

I was telling Maridee that a few days ago i got the blame for him "dying", its my fault for being a horrible nasty @~*%$£*..etc etc... he has been asking me things i have already told him and i ended up getting angry with him last night and told him he had changed and was so nasty now, he disagreed and said i was being over dramatic and that he hadnt changed at all, he said the kids are fine and that as usual i am nagging for no reason!

I laughed when you spoke of your "before we go out in public" lecture... we have that too but it doesnt work he thinks he isnt and doesnt do anything wrong, he still thinks its acceptable to speak to me whatever way he sees fit, looks at me with sheer contempt constantly, you know...i am actually starting to think that he knows exactly what he is doing but is pretending to be clueless about it all just so that he can get away with more..does that make sense..??

A few nights ago i had so many errands to run after work but i popped home to get changed so i told hubby that i would prepare his dinner when i got back, i didnt get back until after 7.30pm, i made a comment that he hadnt even prepared the veg for his dinner and all of a sudden i was accused of grudging making his dinner (bearing in mind i had kids to get prepared for following morning, my own things to prepare for work as i need to get up at 5.30am!!) , accused of not wanting to do anything for him, told i never do anything for him anyway because it always seems to be a hassle and he went into a strop and didnt want his dinner, i had to speak to him like a child for about 30mins to eventually convince him to eat dinner.

So like i said.. as this minute he has fallen asleep on the sofa, probably too much alcohol, but i am sick of telling him that i think he has a problem, i dont think ..i know!! I cannot suggest or say anything but i am wrong, he makes me feel so stupid and worthless, i really wish he would just leave me, half of me thinks that he'll leave when he finds another girlfriend to occupy him, and i really cannot wait for that but the other half of me thinks that this is my destiny for the rest of my life... and i dont think i can live the rest of my life like this.. furthermore.. i think i might be at the point where i dont even want him back to the way he was... i dont think i want him at all anymore!! (or maybe its just the way i am feeling.. See This is what i mean.. feeling all those GGHAF things .. :D

Thanks for listening to me guys.. and goodnight... hope you all have a fantastic day today/tomorrow!!!

xxxx

terriwinget

Hi Macey =0)

I am SO very glad that you found us! Before I found Janee and Maridee, I thought I was crazy and felt so guilty for the things I was feeling. I thought it was really important for us to open this topic because it is such a hard thing to talk about. So, I want to say WELCOME too. You will find much love, support and understanding here.

For my situation, it has gotten progessively worse. I too thought that it should improve and it's been disheartening that it hasn't. We argue like never before and I get those same looks from him like he hates my guts. It's been about a year and a half and I'm honestly not too sure about how much patience I have left. When I read through all of the posts I have written here, it shocks me because I used to have so many rays of hope and now, there is only a couple.

I am glad you brought up the swearing!!! My husband swears in public and thinks it's okay to use the F word in a casual conversation to the Les Schwab man. !@#$%^* That was last weekend and it wasn't the first time he's done that. There is no filter. I just want to run out of the building when he does that. It's something else that has to be added to the "before we go out in public" lecture. "Don't get road rage, don't get mad at the crowds, find patience, don't snap at me and don't swear in public because if you DO, we are turning around." I am laughing as I am writing this, but it's true!

I have something to share about the girlfriend, but would rather do that part in private. My story is a little different, but there's something that might help a little.

Grief, anger, hate and fear. Well, you summed it all up right there!! Thanks for putting it all into words!! One more to add! GUILT! **GGHAF** There, now we have a new word. I'm sorry, I'm really tired and get a little silly. I should probably stop before I get sillier. I just wanted to make sure that you know there is another one of us out there that understands what you are going through.

I will send you a friend request.

XOXOXOX
Terri

Macey

Maridee thank you so much for your reply.. its so good to know that there are people who are going through the same stuff, i totally understand where you are coming from when you say that your husband would do these crazy things and then look at you like you were the crazy one for yelling... I get that from my hubby a lot just now! The kids want me to leave, they think it would be much better if we all just left, he is drinking more and in my opinion he is an alcoholic but he refuses to admit it, he cannot go one day without having a beer!

You're right also when you say about the guilt, i do feel guilty because of course he is here and i should be grateful but i'm not grateful if this is to be my life for the rest of it, or is that selfish as well..??

I am so confused about what I am allowed to experience or what i should be experiencing, i feel like its grief, anger, hate, fear everything all rolled into one!! I wonder if he hates me as much as he looks like he does, i wonder if he wishes he was elsewhere like he seemed to when i got hold of his phone, and most importantly ..right now i wish he would just leave me.. i wish he would find someone else, go away and be happy because i dont want to be this unhappy for the rest of my life!! I know that sounds selfish, but its true.

Finding this site is so wonderful that i can look through all the other posts, reading others experiences and advice, thank you for your advice it means the world to me to have someone who understands what i am going through, i was starting to think i was going mad!!

Thanks again Maridee
xx

Maridee

Welcome to this website Macey! It sounds like your life right now is a living hell! I know, we feel guilty thinking that way because if he had died then we wouldn't have them around. On the other hand, we are now married to this "New" person who exhibits behaviors so different than before that we wonder who the heck we are married to! I think that you will find through reading the different posts that many, many of us surviving spouses/significant others see anger and violence in their post-SCA spouses. I saw my husband throw a sledgehammer at a piece of glass to break it so it would fit into the garbage can! A sledgehammer instead of a little hammer that would have done the job! Glass went everywhere and when I screamed at him for what he did, he looked at me like I was the one who made the mistake. I could go on and on about our outbursts but you get the picture. Something happened to their brains when they went without oxygen and no matter how much we want to see and believe that they are okay, they aren't. I thought I was going crazy until my husband asked me to write everything down that he was doing differently and when I showed him the list he was shocked! It has now been 2 years and the first year was the roughest. It didn't show up right away and only through counseling did I get any validation that what I was going through was real. Please keep sharing with us and reading through all these other posts. You will see that you are not alone and that other's empathize at what you and your children are experiencing. But you have to protect yourself and your children first and foremost. I tell my children )they are married) that this is their "new dad" and this is how he is now. More on that later. Please feel free to keep asking more questions of us. This is a new road for all of us and some have walked alone for way too long. Best of luck!
Maridee

Macey

Hi everybody, my husband suffered a ventricular fibrillation arrest whilst at work 7 months ago. He had to be shocked 4 times in order to be brought back and has no recollection of events from a few weeks before the incident until a few weeks afterwards. The medics reckon he was without oxygen to his brain for several minutes.

It was very much touch and go but he recovered and after many different tests and procedures no cause could be found for the VF arrest, arteries etc are all clear. I was told there may be some extent of brain damage or personality change but there appeared to be none after he was allowed home. It has now been 7 months and we are arguing more than ever, he is forgetting many many things i am telling him, getting angry accusing me of lying to him and me being crazy that i cannot even remember what i am saying to him.

We argued last night a huugggeee argument all because i had an opinion he disagreed with, he looks at me with these really evil looking eyes like he detests me, which i wouldnt find too hard to disbelieve as while he was in hospital out of it i was given his mobile phone (switched on) which showed i wasnt the only woman in his life!

He changes like the weather, one minute fine the next minute really going off on one, i assumed that when he was nice to me that was because he felt guilty about shouting at me, but tonight i have just been proven wrong, i think he actually forgets about it.

It seems to be getting worse by the day when i thought his condition would improve as time went on. At this moment in time i just want him to go get his little girlfriend (which he says is finished!!) and leave me alone. Even our children have commented on how Dad is more meaner now, even though he isnt nasty to them, its only me that gets that, just like i did when he was hospitalised.

He swears without even thinking about it in front of our children which he would NEVER have done previously! I am at the end of my tether, the children want me to leave so they dont need to listen to the arguments, they are 12 and 14, He had a huge go at our daughter for having an opinion too, all she did was make a comment and he told her off big time for it, I dont want my daughter growing up thinking she isnt entitled to have an opinion or scared to have her own opinion.

I dont know what to do and i just want to ask if anyone knows if its common for this to worsen gradually as time progresses because thats exactly what seems to be happening here!

Thanks... oh i stay in the UK

LAL

Thank you, Bus and Janee, for your excellent advice. I appreciate it very much.
Sincerely,
LAL

janee

LAL,
We are so sorry that this happened to your husband. Walking on egg shells and outbursts are unfortunately part of the deal when we make the difficult decision to stay in our marriages.

If you feel your husband's physicians are talking down to you, you need to change physician's. Not all Doc's are like that; I am an RN and know lots who are anxious and know how important the family is as part of the health care team! Your husband probably won't be on the K long; they should be drawing blood levels until it is stabalized. As far as the statins, they are a wonder drug for some with high cholesterol. They may be trying to keep your husband's cholesterol within a healthy range. Some physician's are even taking a low dose statins prophalactaly (sp). Yes, some people cannot take them due to side effects. My thought, get a second opinion and shop for Doc's who listen to your concerns. None of us want our loved ones on anymore drugs than absolutely necessary.
As far as your Doctorate degree, no one really cares. We are all in this mess together no matter what our backgrounds are or how much education we do or do not have. Maybe if you can get past that, it will help you deal with the situation as a human being. And yes, I do care, and wish you and your husband nothing but the best! Janee

sueque1208

Janee,
Thank you so much for your reply, just having this forum helps tremendously, to know there are others out there who understand.

Susie

Bus

Welcome LAL, Yes it is important to take an active part in your & your husbands health decisions. I have found that Dr's tend to CYA by putting us on medications they feel will help. Most meds. have side affects. For me the less meds. I can live with the better. (I was on 7 meds. out of hospital and now on just 3 meds. by life threatening trial/error/logic of what works for me.)

My wife Nancy & I felt much better after I had a
1. WILL: (How you want your assets distributed)
2. HEALTH CARE POWER OF ATTORNEY: (For her to make medical decisions for me if I were incapacitated.)
3. LIVING WILL: (My wishes for NO extraordinary measures to prolong my life.)
4. DURABLE POWER OF ATTORNEY: (appoints someone else to manage my affairs if i am incapacitated.)
5. We put the title to the house in Nancy's name. (My 3rd marriage with 4 kids from 1st.) It took me 3 marriages to learn "Whatever My Wife Says is RIGHT !"

I feel your fear and walking on eggshells. ( This will Pass.)
I felt a little better every day for two years.
Who has more interest in your & your husband's health than you & your husband?

Hope this helps, Bus Awakening Heart

LAL

I do have something to say about personality changes: I can count on one hand how many times I have seen my husband angry (and, it would not even utilize all of my fingers!). Since his heart attack, he has blown up at least three times over things I that were unprovoked. This is very stressful for me and I would appreciate any advice. I am walking on eggshells. This is a man who has no Will, and, while we have been married well over 20 years, we keep separate everything financial. I am petrified at what could happen should he really die the second time.

LAL

I am new to this forum and would like to share my experience. My husband had an unexpected heart attack on 12/11/2008 while running with his running club at his middle school where he teaches band, etc. It was totally out of the blue, since he has been doing this for many years, and, has run marathons, and more. We are both musicians and, because it was a busy time for me, as far as rehearsals go, I was taking a nap at home at the time of the event, in preparation for a very long dress rehearsal that night. I woke up to find everything flashing, both on my cell phone and my answer machine, with all kinds of messages of people trying to find me because of my husband's sudden heart attack. In the meantime, my Minister of Music began banging on the front door! What a shock!

It turns out it was the left descending artery ("widow-maker," as I have learned on this group), and, God was really looking out for him. He had just hooked up with a former student who was a world-class runner who also held a master's in health science, and had asked her to come speak to his running club that day. She showed up and was running beside him when he just fell out! She performed CPR and heart massage on him until the nurse could arrive with AED. The schools in our county now have a nurse on duty and an AED in every school. Because of this, my husband is still alive! There were Angels watching over him!

Now, comes the hard part. I do not agree with all of the meds. My husband has low bp, low cholesterol, and now, he is on two bp meds, Simvistatin, and Potassium. When he presented, he had critically low potassium levels. Now the MD says that was a by-product of the CA.

Statins are very bad drugs, and can cause memory loss, muscle deterioration, and more. We, as a family, are not sick, so this is all new to us. I do not take MD's very well because I also have a doctorate. When we go to the doctor, we are treated as if we know absolutely nothing. This is very demeaning, to say the least. I research everything, and, because my Mother died from having mycobacterium kansassaii and copd, I know a great deal about illness and medication. My husband, prior to this 'event,' never even took vitamins.

My concerns have a lot to do with the medical profession, which I do not trust. Statin drugs are horrible. My husband, on the other hand, wants to be a good patient. The last time we saw the cardiologist, he said, "Vitamin C is bad for you!!!!!!" It took all the strength I could muster to not blow up! My Grandmother lived to be almost 100 because of Vitamin C.

As a result of this doctor's statement, my husband will not take vitamin C. I am saying the Serenity Prayer a great deal these days.

We have a son who is a Senior in high school. This is a serious time for something like this to happen. I need all of the hope I can get.
LAL

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