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Confused but very hopeful

frustratedaughter
0 Recommendations

My 81 year old mother suffered SCA a week ago. She was without oxygen for approximately 6 minutes before being given CPR by the medics. They also began the hypothermic treatment in her home, by IV. This occurred on Monday night. They brought her out of her hypothermic state by Wednesday mid-morning and she began waking up. They removed her ventilator tube that same day. She started whispering. By Thursday she began talking. Her short term memory has been greatly impacted. She bounces back and forth between present time and 40 years ago. The most horrible part is that she continues to relive my fathers death. Each time she coughs, it hurts her terribly. The pain makes her want my dad and she starts crying when we say he died 8 years ago. She does seem to be getting a little better, but not much. I'm amazed by her - she's been through so much. My brother is already talking about a longterm nursing home, but I think she might regain her memory. Is that possible? The Dr. said her heart is healthy, she had very low potasium, which may have caused her SCA. She is being put in a rehab facility to help her get back on her feet. Am I being too optimistic to think she could get back to her home? I'm so scared that if she thinks she won't go home, she'll give up. It's only been a week, I think she's doing well for her age and what she's been through.

22 replies

terriwinget

I don't think you are being too optomistic at all!! She has made remarkable progess in such a short time. I think that home would be something to try before she is put into a nursing home. If she has the chance to improve, the nursing home would take away that chance. Nursing homes are where people go to die and they are horrible. They don't get the care they need. Your Mom is a miracle coming out of this the way she has. I don't think she's done living her life yet, don't you think?

I vote for rehab facility and then home! :-)

Tammy1

frusteratedaughter,

Rehab is definitely the way to go I think. I agree with terriwinget. She is a miracle being this far so soon and home is her best bet! People do so much better at home with loved ones than in a nursing facility of any type. She needs you now more than ever and don't be surprised if there are changes in her attitude. Just be there for her, some things she won't have control over at first.
I had my SCA a year ago, I was in the hospital for a week and I still don't remember anything from about Oct 21-22 to a few fuzzy memories of Halloween. I still have short term memory issues and some long term things are gone, but I am alive! Celebrate the small things and the biggest of all, your Mom is still with you!
Keep us posted with your Mom's progress and how you are holding up.
Blessings,
Tammy

frustratedaughter

Hi Terri,

I agree!! When I found this website, it gave me so much hope. It's impossible to get any answers from the Dr's and Nurses - they are all wonderful people but very tentative in providing any specifics. My oldest brother is very authoratative - ex-boeing exec. He loves and adores my mom, but tends to look at things more scientifically than I do. I truly believe that her progress would be quicker at home. Yes - she needs rehab, but I agree with you that nursing homes are horrible places. My mom was adamant about never being put in one. Hopefully we'll be able to afford having someone come in to assist her if she needs it in her home. This whole experience has been so strange. She was at my house a week ago healthy, laughing and having fun, then the next day it happened. Her personality has changed so much - she is SO much nicer now. Thanks for reaching out - you've been through an awful lot. You must been very strong.
Rosemary

frustratedaughter

Thanks Tammy -

I'm glad you're doing well - this whole experience has been so strange. My son called last night. Him and his wife took their 3 month baby to see my mom. She was so excited. She remembered my daughter in law right away and remembered that she cut hair. They've only been married 1 year. She also talked about my dad in the present tense which is progress. She continues to amaze us. I'm sitting here crying - happy tears! I will keep you posted. My mission is to get her back to her home.
Rosemary

jeffreylinda

My SCA was 3-22-07. My memory was bad at first. While I was in the hospital, I couldn't remember anything. Every time I woke up, I would ask the same questions. My memory has come back but the events of that week are a little fuzzy. Your mom should get better. She is another one of us miracles.

linda

Maridee

All of the above are true. My husband was without oxygen for 8 minutes and he has some memory loss but after 1 year it is coming back. We called it "Groudhog Day" in the hospital because he would ask the same questions over and over. Every time he woke up we would start over again. Once out the hospital (12 days for him) he began to retain his memory. So of course be very hopeful! It sounds like she is doing great and if she was living at home before the incident, with watchful care I am sure she could come home again. Expect some setbacks for sure but she has survived this so far. Hang in there.
Maridee

Mary1

My family also called it "Groundhog Day" when I had my SCA 2 years ago! I am now back to teaching full-time. I have some very minor short term memory loss, but nothing I can't cope with.
Some ideas for your mom... my family gave me a journal to write in. Also, they kept a separate journal for visitors to write in. I read and reread these journals while I was in the hospital. It helped me to at least have a clue about what was going on, as I didn't remember most of my visitors.

terriwinget

Ha ha ha! "Groundhog Day!" I love that! I have been laughing about that since I read your posts this morning. It was totally Groundhog Day - for a lot of days!!

I think it's so neat that survivors are able to come here and share experiences and insight. All of you have helped me SO much during the past year, so THANK YOU everyone.

I agree with Mary too. Journals are the BEST. We had written down some of the crazy, but funny things John had said in the hospital (like him telling us about his night out with Jessica Alba and Brittney Spears). Laughter was probably one of the most important things that helped us through the experience. It really helped to take the fear out of it all.

I also kept a journal throughout his recovery. I didn't realize how helpful it was until I started looking back, reading through some of the things I had written. Some days were really hard and I would ask, "Is he going to get any better?" But then, I could look back and see how much progress he really was making.

I ALSO wish that I had taken pictures in the hospital. John doesn't remember September through November of '07 (SCA was on 09/29/07). I didn't take pictures at the time because I didn't want to remember him "that way" with his teeth all broken and his face black and blue...but in hindsight - I sure wish I had some pictures to show him!! I would have even videotaped him if I knew then what I know now!!

Rosemary - WOW!!!! Your Mom is AMAZING!!!! I am so happy to hear that she is coming around so quickly. You too will give SOOO many people hope when they come to this website. :-)

Mary - congratulations on going back to teaching full-time!!!

:-)

Terri

terriwinget

Rosemary - you are practically right up the street from me! Lol!

frustratedaughter

I'm so happy that I found this website - I've felt so desperate and scared until now. This site honestly feels like an oasis in the middle of a desert. Looking through the web I was feeling more and more panic - reading through this site I feel more and more reassured. Hearing about everyone's progress is inspiring - I love it. More updates on my mom - we call her a "Tough Old Bird" she always smiles when we say that. On Sunday night after having family and friends visit all day and evening and still not remembering that she lived in Bellevue - she thinks she still lives in Seattle - something clicked in her mind. At around 11:00 at night she remembered her home phone # and began calling - my brother lives with her. She told him to come pick her up. He said no, she wasn't well enough. She then called my other brother in Bellevue and demanded that he come pick her up or she'd walk home. She continued to call both of them. They finally called the hospital. The Nurse told them to unplug their phone and keep their cell phone next to their bed for emergencies. My mom then got into a screaming argument with the patient sharing her room because she had the TV on. They had to move her room mate to another room. A Nurse ended up spending the night in my mom's room to keep her calm. I know this is progress - it actually is more typical of her personality - she can be demanding. Up until then, we were really enjoying the new sweet version of our mom. That probably sounds really awful. I didn't see her yesterday, I had to work. I am going over today to spend time with her. She should be ready soon to be transferred to a rehab center. I think she'll be able to go home quickly by her progress so far! I'll keep you posted. Thanks for all of your support.
Rosemary

janee

I too, wish that I would have video taped my husband during his rehab to show him how much improvement he made and to have a visual diary for him. I think neuro rehabs should suggest this to patient's families!

Maridee

I feel I must reply again. When my husband had his SCA I too read the websites. The news was anything but hopeful. The doctor's didn't even want to implant his ICD until they were sure he would "be okay". The first few months are rough, no doubt. But one and 1/2 years later there is such a MAJOR difference--good in his case. Sure there are things I notice on a daily, if not hourly basis. But we have made it through it. When you mention your mother's personality coming back to where it was before I had to laugh. My husband is very serious. Yet in the hospital he was telling jokes, throwing spit wads with the grandkids, coloring, etc. Everyone thought it was so cute that he had this new personality. I, on the other hand, was terrified. I thought "What if he never moves on to the same old person again". Well he has. So my advice to you is expect the unexpected. Who knows what tomorrow will bring your way. As someone who lost a mother recently I say cherish every moment, good or bad, you have with her. She will be gone too soon so say those things to her while you have the chance. Best of luck, contact us anytime. Everyone on this website has experieced something, sometime, somewhere.

Maridee

Mary1

Thanks! It's not always easy, but it's working.

Mary1

My husband also thought about video taping me after my SCA. He decided not to because he was afraid of what it would be like if I never got better, or worse, didn't survive. Now that things are well, he wishes he had. I would be curious to see it, yet I'm not really sure I'd want to...

terriwinget

I totally understand your husband's feelings about videotaping. I appreciate your perspective a lot because part of me is grateful that John doesn't remember any part of the experience. He takes everything so lightly and isn't even freaked out by the ICD. As far as he knows, he was here one day, gone for a few months and then came back with some memory problems and a little bit of an attitude. :-) So I guess...since he's not freaked out by it all - I should appreciate that. So videotape no (thanks for giving me peace with that) ...pictures yes. He probably would have thought pictures were cool. He has NO idea what his face looked like or how many things he had attached to him.

Mary, how is your husband doing? Did he feel paranoid and anxious for a while and/or does he still?

Paul_Pakusch

I am Mary1's husband. We did get a few pictures of her in the hospital. You can see them here, plus a few other details about her: http://www.precelsus.com/marysmiracle.htm

I made this web page because we are both so passionate in our thanks to emergency responders, medical professionals, and want to spread the word about getting people to learn CPR.

Paul

Mary1

Terri,
I'm going to let my husband respond to your question. He said he didn't notice it before. I think he was excited to be able to post the pictures that were taken of me while I was in the hospital. That is one way he copes with all of this.
I do think it was harder on him than on me. I don't remember it. But last year when I had my 2nd one, I remember getting dizzy and then waking up on the kitchen floor. I do feel more freaked out now. But I work hard on keeping it in perspective. As Paul says, at least now we know for sure that the ICD works! Trusting that was really a huge stressor after it was implanted.
Anyway, I'm sure Paul will be posting soon!
Take care.

terriwinget

Paul & Mary,

The both of you are two very strong, amazing people and I really appreciate everything that you have shared. The website is great and gave me goosebumps. I also like the way you have defined the difference between SCA and a heart attack. Many people don't understand the difference. And quite honestly, until a year ago - I wouldn't have known the difference either.

Thanks for the affirmation that the ICD really works! Mary, you better stay out of your kitchen! :-) Just kidding!!! I worry so much about it and your story makes me feel more confident. It's such a crazy mystery to not know the cause of something so major! "They" tell John to do everything he used to do, but I still get nervous when he breaks a sweat, even though I've been told a million times that overexertion had nothing to do with it. :-)

I am sure it will take time to settle down, but I still want to be "on guard" and ready for action. I definitely agree that the importance of getting people to learn CPR is HUGE. When I took those classes, I never thought in a million years that I would need to use those skills or if I would even remember what I learned. But something spooky took over me that day and I'm so glad that I had that exposure. It was so different that doing it on the plastic dummies!! It was actually kinda NEAT! I mean, not neat at the time...but I'll never forget how quickly I realized how it works and why it works.

Thanks again to the both of you. Your support means so much to me!!

Paul_Pakusch

Terri,

In response to your question, I felt VERY paranoid and totally freaked out when Mary came home from the hospital. It was bittersweet, because although it was great to have her home again, I felt she was safe in the hospital. I had to learn to trust the ICD. At night, I would watch her to make sure she was breathing. If I heard a loud noise or something dropped in another room, I would race in there to make sure it wasn't her collapsing. If she dropped her head down the way I saw her lean just prior to collapsing, I would panic until she responded to me. Mary, on the other hand, seemed to have the same attitude John has: No big deal; a small piece of her life was missing from her memory and all she knew about it was the stories that family and friends told her about it.

Now our roles seem to be reversed. After her second SCA when her ICD saved her, I feel a lot more relaxed because I know the darn thing works. This time, Mary remembers feeling dizzy just prior to passing out and she remembers waking up in a haze on the kitchen floor. I think she is afraid of that feeling and panics when she starts to feel dizzy for other more normal reasons.

What concerns me now is that we don't know the cause of her SCA's. It worries me that this is genetic and that our daughters may be affected. Mary's cardiologist is seeing and running some tests on each of them, but so far nothing has showed up.

By the way, "Groundhog Day" was brought up, but one thing Mary doesn't remember well from her hospital stay is that we actually compared the situation more to the movie "50 First Dates," with Adam Sandler and Drew Barrymore. If you haven't seen it, Drew played a character who loses her short-term memory every single night. Adam plays her love interest and must find ways to remind her every morning who he is. It's a cute romantic movie, and one that anyone who has helped someone through short-term memory loss will appreciate and enjoy.

Mary1

Thank you, Terri. I think we ALL are strong people. We have no choice when we go through an experience like this. Thank goodness for this forum.

About our kitchen... We kept making the same joke! We've actually moved since then. Hopefully the new kitchen won't be a curse! lol

Your comments about worrying when John "breaks a sweat" - I feel that way sometimes, even though the doctors don't worry about it. But, tell John it's a great excuse, too! So many people in my life won't let me do things because they're worried about me. (Like carrying a 12 pack of water bottles into work.) I like to say it's something to take advantage of! (truth be known, though, it does bother me sometimes)

By the way, thank you for being trained in CPR. I know this is one of Paul's big causes now. Sadly, I still am not. Even after my experience, it still scares me to feel like I have that "power" and may have to use it someday. I know that's crazy, and wrong. I will get around to it, with Paul's encouragement, I'm sure.

Take care.
Mary

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