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Hi Everyone


Cathleende

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Hello everyone, I feel like I know you all! My name is Cathy and my husband John had a hemorrhagic stroke on 04/30/2013. I have been reading Strokenetwork for a very long time. I even got in touch with Julie from St. Louis for a period of time. I am very familiar with Nancyl, Englishlady, Hostsue, Fred, Cagedbird and so on. I also participated in a live chat once, then I guess I got caught up in my life and decided to not actively participate. Guess I have changed my mind.

 

I suppose I will start with some details about John's stroke. John had spent a three day weekend back home in St. Louis with my son, John. My son, John, blogs on the St. Louis Cardinals farm team and the Cardinals invited the bloggers to a dinner and a game. They had a wonderful time and drove home to Georgia on Monday. He went to work on Tuesday morning as usual. About 9:45 a.m. I got a phone call from him tell me he could not move his left arm or leg. I told him to call 911, he said they had and told me what hospital he was being taken to. John is a auto technician by trade and was on a test drive when he realized he could not move his left arm to turn on the blinker. He drove two mile back to the shop. The last thing he remembers is being put in the ambulance. He was alert and aware of his surrounding once at the hospital, although does not remember. In fact, in the emergency room he was able to get his list of medications out of his wallet and give to those attending to him. (He had a massive heart attack in 2004). However, his eyes became fixed to the right and he started to vomit. They intabated him and took him to surgery. He had several setbacks in the hospital; he stayed two and a half weeks. He then spent six weeks in rehab.

 

He has been in some kind of therapy ever since. First, home healthcare, then a day program at Emory Hospital here in Georgia and we are currently in outpatient. Outpatient visist are about to run out. He remains paralyzed on his left side. He can walk very crudely with a hemiwalker and me holding on the his belt, but he has got nothing coming back in his shoulder. Although, he can move his left hand, but has a strong grasp reflex, whatever his left hand gets near, it graps and won't let go. We call it the venus fly trap! He has strruggled, like so many, with major depression. He now suffers with sleep apnea and depends on me for nearly everything. In any case, that's where we are.

 

John is 61 and I am (at least for a couple more weeks), 55. I am physically able to care for him. I feel very fortunate to be able to do it. I see so many people who cannot care for their loved ones. Although, I do wish sometimes we were back home. We moved to Georgia in 2009. The ecomony forced us to close a business we had owed for 32 years. We worked together everyday for 30 of those years. When we lost the business, we decided what else do have to lose and decided to move down here to be close to our son, daughter-in-law and grandchildren. We have a large extended family back home that we miss very much.

 

What prompted me to write tonight was a look down memory lane. I was looking at some old pictures. We were so young, so thin and so different then. We have been married nearly 37 years. For me it was love at first sight. He says it took him about a month for the love-at-first-sight effect to kick in. I try not to be sad, but the truth is I am. At the same time, I always say that I am a very lucky woman for I am a woman who knows what it feels like to be turly loved. I am crying as write. I don't want to be sad.

 

In any case, this has gone on too long. I just wanted to get up the courage to find an outlet. I think it's necessary. I know that reading what everyone shares in their blogs and posts has been something I look forward to and has helped me get through this. Thank you all for your honesty and the compassion you show to those who need it. It makes me feel good to know that what I have always believed is true. People are good at heart!!!!

 

Thanks For Being There

 

 

Cathy

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Cathy - I am honored you are familiar with me/us.... so as you know depression has been the biggest issue we have.. and yep my dear it gets to you to... once when we were in NY ( we stayed with 1967 stingray ) aka colleen and ray -- ( actually we have been there twice) any how colleen got to see one of dans depressions and how it literally - infected the whole household.. I have no secret cures ( as you know) make sure he takes his antidepressent - and you to - just to make it through the ups and downs.. no way i could have survived with out it... make sure he does not have a uti ( sneaky things) and make sure he is well hydrated. those are my 3 basic things.. also watch the bowels , they can get stopped up the gut gets as messed up as anything else during a stroke... and if you can have him avoid sleeping in depends and use a urinal - of course there has to be enough cognition for this to work, but it really helps with the uti prevention.. took dan 2 years to be cognizant enough for us to "pull it off" ... dan was a extremely in shape athletic type of person very can do- so him losing his independence and sense of being the provider has been hard... now he is forced to let me deal with all issue and it hurts his pride.. he was very mechanically inclined like your hubby , he could fix anything... now a remote control confuses him... even a seatbelt will at times... but it is what it is, and you like me took our marriage vows for better or worse - well. this isent the best - but i am happy he is still here with us... been though tough times sometimes he claims he just wants to die.... but other times he is "so-so" as he says to people ... as long as our world is kept small and not to much is "thrown at him" we manage.. but it sue isent easy.... you hang on girl - it will get better, and worse and better and worse, but when you step away in 2 years and read your blogs - you will see a gradual ( very gradual) incline .. and hey no one promised us a rose garden right lol... hang on - we are here and more than happy to "support you" it takes a village... and we have one right here on our little website... called stroke net USA - where the lightning has struck..... nancyl

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Welcome to the Blog Community Cathy. As you know we are very supportive of each other here, both caregivers and survivors. Yes, we know each other through our blogs and on reading someone else's blog will suddenly think: "Aha, just as I am experiencing" and that is marvellous as we trust each other's insights.

 

I hope you find all the love and support I have found on these blog pages and know that we cannot be with you in person but we can be with you in spirit.

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I remember coming up to the first anniversary, just waiting for it to pass so I could relax a little. It's a good time to look where you've been and think about where you want to go. Time to accept that life has changed and to put things in a positive light as much as possible. Which I see you are doing! Yes the photos are tearjerkers, but also will help you see the full curve of your life together.

 

Strokenet saved me. So many new online friends and advisors; knowing I wasn't alone. Every fear, every setback, someone had been there before me. And then Nancy appeared out of nowhere and pushed us out of being recluses and 'fraidy cats, and flew here with Dan, and then next visit with her daughter too! Both times we went on cruises to the Caribbean, yes it's possible! And she set up meeting Ethyl/Debbie and her husband Bruce at the casinos here too, if not for that kind of push I don't know where I'd be now. That's the true meaning of "support" and that's why we're all here. You get so much more than you give. I became so brave that last spring my husband Ray and I took Amtrak from NYC down to Georgia for a week to visit my brother in Albany plus his his friend near Atlanta. Ray used to LOVE trains, it was a lot of work on my part but it was fun too. I try to look at this as an early retirement, I did always want to travel once I got the time.

 

I too miss my family at this point in my life, most of them are in one area four hours upstate so we have gone to see them overnight a few times. I not only have a very extended family but the nieces are all having babies now, I wish I could be more involved. In the beginning, they all came and visited down here, helped me install the ramp and bars etc, put in a garden for me; my sister from San Diego even flew in twice and stayed for four or five days each time. But eventually they go back to their regularly scheduled life, when they see things are what they are. It's only natural. When you are ready, you can go see your family in St Louis. And who knows, eventually you may move back too. Just go with the flow! I love where I live right now but as time goes on I know I probably won't be here forever. The house and yard are just too much to keep up with, when you have all the caregiving to take care of too.

 

You and your husband are just a few years younger than us and married exactly as long. The love at first sight was on his part, I just liked his souped up Camaro in the beginning ;-) I too am thankful I started going the gym when I turned 50 or I wouldn't be able to handle the physical part of all this, someone was surely watching over me! My husband is in a wheelchair (mostly by choice) but we get out pretty much every day, even if just for grocery shopping. I also say thank goodness we weren't on our second or third marriage as so many seem to be now, or I may have not felt it was worth it to give up my life for him. We are so much closer now, even though we can't talk anymore. That fact amazes me on a daily basis.

 

We too have no one nearby (except his brother and sister, who have never offered to help) so we struggle on by ourselves. If you are doing everything with no backup (unless hopefully son chips in?) remember, you have to take care of yourself too. I know! Easier said than done. But find ways to decompress if you can, and don't feel guilty about it either.

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Cathy, I just want to say my stroke caused me to sell my bowling pro shop business inside a bowling center. I was doing real good business making customers happy and bowling high games with new balls. As I was getting ready to leave home and go to the bowling center to open for the day I had a brain bleed stroke. I stayed 5 months in the hospital came home unable to walk so I had to sell out.

 

It's now been 10 years I use a scooter and I been driving again that long still use a cane to walk with so I feel pretty good.

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Cathy- if you could see me reading your blog, you would see the big smile on my face. I'm so happy you came back here to blog. You can see you have a good welcome and support here. I really did miss "my St. Louis buddy" in chat. Hope you can come back to that too.

 

It sounds like your husband is getting some good therapy. It is good he can walk with the hemi walker Larry can walk with a cane but with baby steps. He cannot use a walker as his left hand has not come back. He never complains tho, and I can be thankful for that. He has gone through many issues but the biggest is his appetite/swallowing problem.

 

We just have to plow through things as they come along. I tell myself things could be worse. We are all in the same boat here and only on this site can we get the support and advice we need.

 

It would be fun to have you stop by when you come to visit your family here. Spring will begin the 20th and the Cardinals will be playing here soon. Go Cards!

 

((hugs)) Julie

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Hi Cathy, my husband stroked on Feb 29, 2012 & had lots of clots fly into his brain, the doctor suspects a plaque tear, as it was not just one clot, like many strokes. Unfortunately, he also had a bleeder from the treatment they did trying to dissolve some clots. It's one of the risks - you really don't know which risk to take - have it or not, but he had it. Anyway, before his stroke he was active, athletic and traveled the world teaching Six Sigma and Lean Manufacturing. When he would fly into one country, people from nearby countries would fly in there to be in his classes. To have had people from all over the world fly in just to hear him, and now, not even be able to express his needs, feelings, wants easily... :(

 

He originally was affected on both sides, but one side cleared up in a few days. That was his left dominant side, thankfully. His non-dominant right side was completely gone. He has shoulder muscle where he can push his arm forward or hold it up a little when I dress him, but nothing down the rest of the arm. He doesn't really have control over his hand, but he can close it by concentrating very hard - can't open or use it in any way.

 

He walks with a gaitbelt that I keep hold of, because of balance issues and also since he lost about 60% of his vision (can only see from his nose and to the left) he is also apt to walk into things and turn himself over. Does not respond well to prompts to scan as he walks.

 

He has aphasia and has recently seen an improvement in working on that. He had to learn to read all over again, and is finally up to maybe a 6th grade level - but I say that from my own childhood, I have no idea what a current six grader reads like... so maybe by today's standard, he went from Kindergarden to 2nd grade - don't know.

 

He has cognizant issues and can't really get things like food, drink, meds by himself. He can eat whatever I put in front of him and have already cut up - so I'm happy about that - I just have to watch him and remind him to drink ever few bites or he ends up puking into his plate. I'm happy that he has an appetite and I just have to keep after him about drinking, which seems to be a common problem.

 

He has no bathroom controls except:

1. often I hold a urinal for him to try when I change his shield in his depend. Sometimes he can, sometimes he can't.

2. he can't really hold a BM in, but he can tell when it's coming, so we usually can make it to the bathroom at home in time. We try to wait to go anywhere till after that is done.

 

He takes 1 citalopram a day, and it is perfect for him to stay positive and in ready to work toward his improvement, without putting him into la-la land. Without that, he is one miserable wretch.

 

I have recently gotten a Kindle Paperwhite, and eventhough I can only read a few paragraphs at a time, it is a good thing. My brain is happy to have something to think about to keep it sharp. I also like to crochet & knit, and we were just getting to the point where I was getting comfortable enough and Bob was improved enough that I could begin to think about doing it a little again, when we had a plumbing issue that flooded our home and put me back to just trying to get by again. But, feeling good today and happy to have my husband. I don't see his wheelchair and all he can't do, I just see him. We still manage to have happy days :)

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Hello Cathy, glad that you remember me, and wonderful that you have come back to join us. Like I mention to you before, this site is a "family", we are there for you. Want to vent, scream, cry, or laugh, come on and share. I understand about looking at "old photo's", but life goes on and lets look forward. My husband and I have been together 21years, and after my stroke and depression, we seem to be closer, and Iam blessed that he is a wonderful man, a great father and cool grandfather! Thank you Lord! Also strokenet, helped me, I saw that i was not alone, and people did care, and there is a lot of love going around you just have to find it.

 

Keep in touch Cathy, and come to chat, everyday at 3pm and 8pm.

 

God bless

 

Yvonne

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Cathy: welcome back. That first year is a true nightmare. I did not find this site until 9 months post, for my Bruce, and really, honey, I would not have been on here much if I had found it before. Way too much to get under control and organized.

 

So you are at a good spot. Have the major stuff under control, support now falling back and hopefully some breathing time.

 

Come back to chat if you can. My Bruce is a farmer by birth - LOL. Up with the birds and down at sunset. Our routine is set that I can shower, get into comfy pjs, set up for morning, pour a glass of wine and join the group. Julie's Larry stays up a bit later, so she has an hour or so when he is relaxing, watching a TV program and enjoying a bowl of ice cream. Hopefully you can find that time.

 

Bruce is coming up on his five year anniversary. And he needs a lot of assistance with his daily routine. I too often think of what was and what could have been. I try to stay away from that. But it does creep in. I may cry for a bit-and I think this is healthy-but then you just move forward. This is what we have been handed and acceptance is key.

 

Thank you so much for blogging and updating us. And I do hope we will see you here often. Remember you can help us as much as we can help you. Even if you just blog what is working is a huge help. Debbie, caregiver to husband Bruce, stroke March 2009

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Cathy :

 

welcome to best online stroke support group, first few years are hardest for every one involved, but it does get easier. I stroked at age 34 which left me paralyzed on my left side & retired me from the job I loved.had it not been our young son & my husband's strength I would not have come out of that phase alive. I hanged dearly on my husbands strength till I found my own again. I know it has to be so hard being caregiver since you have to step out of your comfort zones & hold the fort till we survivor get our bearings together. I found blogging & chatting with other survivors very therapeutic for my soul. Today after 10 years on this post stroke journey I can view my stroke as just speed bump in our life's journey. It allowed me to slow down & enjoy scenery along the way.

 

Asha

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Hi Cathy, Thank you for sharing your story and what your situation is now. Although my mom has been living with me for 6 years, she was extremely independent until her stroke a week ago (she's 89) and I am just finding out what the future is for her and me. We have gone around the world birdwatching (and photographing) and I am very sad to think she may not be able to participate in the same way. I am lucky she has started to eat (ground foods) by herself, is able to speak (although sometimes searches for words) and is learning to walk again (in acute rehab). Her left arm is paralyzed so far (can raise it from the shoulder) and has 'left neglect' syndrome. I hope I can take care of her at home eventually (I work full time but work is 5 minutes away), have a sister about 30 minutes away that travels for work, a son who does not live at home who also works full time and another sister 3000 miles away so my support system is limited.

I don't know if my Mom will be able to live alone without constant supervision; Before the stroke she had shingles one year and pneumonia another year and I was always on tap but not 24/7 that she might need now. I am trying to take things day by day, take advantage of the time I have for myself now that she is in rehab. You are fortunate that you have found a way to be home with your husband, your story is very courageous.

Carol

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Hi Cathy, glad you came back to the site. I too have those days when I sit and look at the pictures of my husband who at the time of his stroke was my room mate and best friend. He at the time was a wonderful cook, musician and avid motorcycle rider. He lost all those things when he had his stroke. We had just started building a relationship and I miss the "what might have beens" but at least I have him. We are slowly learning to live life in a different way. Yes he has gained some of what he lost back and he is still gaining everyday but it is slow and at our age we don't know how much longer we have so we try to rush things. I pray that you and your husband find a happy new way of living life. It is hard but we must fight the depression and trudge on! My prayers are with you both!

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