mikev

Thank you all for your kind words, hopes and prayers. Bernie fought a valiant 4 years after her brain bleed. During her first year of recovery she spent almost 4 months in the hospital and 5 brain surgeries. I can't count the number of days in ICUs, and she always fought back. She struggled with most of everyday activities and like most caregivers (especially men) I quickly learned how to do the same things she always did for me and more. I say especially men because of my lack of cooking skills, all the while not knowing that Bernie was just teaching me to take care of myself. Bernie, even with her Irish, never ever complained about her circumstances. She also taught me that we just do the best we can and turn the rest over to God, then move on, a skill that I've not completed my apprenticeship in. We also fell more deeply in love over the last 4 years, which I suppose is the reason that my heart is so broken and I'm having a very tough time. Once again, thank you all for having an ear. Mike

Dear Friends, I have been absent from the Stroke Net for a long time while devoting much of my time to caring for Bernie. My dear Bernie passed away 2 months ago today. She was home with me with hospice care. The last few years has not been kind to Bernie, repeated seizures and a severe anemia caused a multitude of problems. The last of which was repeated episodes of an enlarged spleen. Radiation treatments to shrink the spleen, although successful, caused horrible bone marrow problems with catastrophic effects in her own blood production. In June of last year she spent the month in the hospital, while there she received 20 units of whole blood and I lost count of the platelet transfusions (Bernie had about 80 units of blood in the last 4 years). During that time she had 2 severe seizures that had a lasting effect. In December of 2013 I noticed her appetite getting worse again (a sign of the spleen enlarging once more). She was very weak and thin. We went to the hospital in January and explored the options which were few, she was too weak for surgery and needed blood and food. Also, we were given the news that her myelofibrosis (blood disorder) had evolved to a state of leukemia. Nothing but tragic news was coming our way. Two days before Bernie left the hospital we had a feeding tube surgery scheduled. They were to put a tube into her stomach with the end of it reaching the duodenum. The enlarged spleen was crushing her stomach so this type of surgery would have gotten nutrient in her and allowed her to get stronger, hopefully. That morning, when they came to get her for surgery she called me into the hospital bathroom and told me and the nurse "no more" she said "Mike, I think I'm finished with all the surgeries and poking and blood transfusions. I just want to go home and take my chances." I asked her to please reconsider the tube and she told me "I've made up my mind, let's go home". She knew what the consequences would be and even though I understood, my heart broke. Bernie and me, and our daughters met with hospice before we went home. Bernie came home January 21st under hospice care and me, I could not leave her. At first she could still have a cup of coffee, a little juice and maybe a few sips of soup. She just continued to weaken and not able to eat or drink anything the last couple of days. I thank God that she was in no pain during this time. On February 5th she passed away, and so did most of me. During the last 4 years I prayed to God to keep me healthy enough to take care of Bernie. I am very grateful to have had the opportunity to do that. My life now continues to be in shambles. I'm going to try and attend one of the chat rooms, I'm not sure I can do that yet. Telling this story, has me in tears again. We were married nearly 47 years and we were always in love. I tried to write this directly into the blog twice and messed it up both times. I hope I remember how to copy and paste. Peace and Love, Mike

Dear Ruth, Keep up the good work. William will be told often by many that he needs to be very grateful to you for sticking to the routine and not giving up. I sure agree with you about Gabby's care and I wish we all had access to the rehab and steps that are being taken for her recovery. We have been blessed with figuring it out as best we can and like you, pushing and prodding our way through. I'm a pusher too, Bernie hates it but she's doing well and improving and that's what counts right now. William is improving because of your active roll in his recovery, as long as he recognizes and acknowledges that fact it's a little easier to accept. Although I'm with you on the me time and I hope you find a break once in a while. Mike

Dear Friends and Support Group, So much has gone on since I’ve last written anything here, I’ll try and bring things up to date somewhat. Bernie is doing pretty darn well, considering the beating she took last year. She is currently in therapy 3 days a week and filling in the odd days with neurologists, nephrologists, hematologists and others. She quit using her cane and rarely uses a walker anymore, only when she is very tired at night or on just waking up in the morning. Her left side is steadily improving and she can prepare and take her meds by herself (I’m still there to observe). What a sport she has been through all this. She has a regular hairstylist coming to give her haircuts now that her hair has grown back. She also is starting to answer e-mails and makes phone calls to our daughters and her sisters. We went to a St. Pats party at one of the local church halls, we Catholics always have halls with our churches (need a place to play bingo you know). We were seated with Bernie’s sisters, sister in law, a bunch of nieces and nephews. Bernie even enjoyed a little corned beef and a glass of beer while we all joined in the sing along with the wild Irish band that was playing. Bernie still has the hyper extended neck, although it is getting a little better. She walks in to most of her appointments now. I still use the transport chair if it’s too far. In the car she can buckle and unbuckle her seat belt now, it’s not easy but she can do it (she knows it’s one of the steps back to driving). On Tuesday we went to the surgeon’s office that put her peg tube in and discussed her progress with eating. She had gone 25 days without any tube feeding and eating adequate calories with a semisoft diet for the entire time and also was taking all her meds by mouth without crushing them in apple sauce or anything else. The doctor said it’s time to take it out, and that it had been in too long. So for the first time since May 19th of last year Bernie is without a feeding tube in her stomach. But nothing we do comes without a hitch. While removing the tube the bulb that holds it in place popped off the tube and is now in her stomach. It’s normally supposed to collapse and pull out with the tube. The Dr said that’s one of the problems with leaving them in so long. The stomach acids deteriorate the connection and it can fail. Nothing’s easy. So now we wait it out, it either passes in a day or two or Bernie has to have it removed through the mouth in one of those gastros***ophys (however you spell it). Go! Bernie Go! Bernie still struggles with the bathroom issues but even that has improved a great deal since the tube feeds and liquid diet have ebbed. We are very grateful for every little step forward. We count our blessings daily. Thank you all for your prayers, ears and support over the months, I love you all, God Bless You, Mike

What nice news for you Debbie. Lights of hope always shining. I can't imagine how great Bruce must feel. Happy Birthday to Bruce and good feelings to you. Mike

Mary Jo, A successful surgery, that's great news. I hope Dan's recovery goes as well as he seems to feel. Eating well is sure a good sign. Here's a little tidbit for you: My Dear Mother passed away 2 years ago at the age of 96. She had a colostomy for 35 years, traveled Europe and all over the U.S. with it. Good luck and prayers for a quick rehab, Mike

Great job Debbie, You've always got it so together, Bruce is lucky to have you at his side. Bernie does the two to three hours in her lazy-boy chair every evening unless I push her a little to get up and move around. It's great Bruce having some chores and living up to them. Bernie is up to closing a couple of the blinds at night. Dinners are next. Happy "purple mist", Mike

MaryJo, The next time I feel like a fish out of water in a new hospital or ER or talking to some patronizing admissions person, I'm going to tell them I know MaryJo. What a case of luck getting the ear of the facility director. You are in charge, that's for sure. Great Job, Mike

Sue, What a nice blog to read. I can always get an illustration in my mind when you write, visualize the beach walk and homes along the way. What good luck to meet someone during your stroll that knew your family. I hope Ray enjoys the company during the daycare times. I missed you at chat a couple of weeks ago. Bernie has had so many therapists and Doctors appointments lately I've been too exhausted to do anything, still trying to get Bernie to eat more and wean off the tube feeding. I hope to see you Tuesday. You sound rested enough for a restart. Mike

Welcome Pat, Great pictures, hope your business aspirations go well. One of my goals this year is to get a dog, if I can talk my wife into it that is, maybe, with the right gift, I can work a deal on Valentines day. Looking forward to your next set of photos, Mike (cargiver to Bernie (brain bleed April 2010).

Sue, It sounds as you had a wonderful, and well deserved holiday, and also forgot for an instant your usual daily grind as it can be. You even had someone else cooking for you. "Here Here to the Queen." Your weather is ours in reverse, it was 2 degrees below zero this morning here in Michigan, freeze or toast, I don't know which one could be worse. Your summers have been too wicked lately. I got Bernie a Wii for Christmas, hoping she would get interested in it, not yet, but I have fun with it. It can be as addictive as any new game. Everyone missed you, especially in the chat room where things didn't get too out of hand, well ok maybe a little. Anyway, Welcome back Sue. With a big hug, Mike

Dear Karen, I will be praying for your happiness with Bill and hope you both will have many smiles and close, warm hugs for eachother. Now, is all we have, I hope all of your nows with Bill are the best they can be. Keep in mind there are many who have read your post and just don't know what to say or how to respond, they're all praying for you too. God's Strength to you and Bill, Mike

Thanks Lenny, A great reminder to me., Mike

Sue, Your post is loaded, you're not complaining when you just want someone to yak at for a while. You talk about the air conditioning being in demand, we could use a little of your heat here in the mid-west U.S. One city in Minnesota was less than -40 degrees farenheit early this morning. I'm in Michigan and we are dealing with 2 to 8 degrees tonight. Are you in any of the flooding danger? You guys have had a tough couple of years with the weather. Funny how we turn a thing like a pencil into a gotta have it right now. I don't know about you but it seems like Bernie calls, I run. Hmmmm, what's with that? For your back, you need to do what I do. A couple of cans of Miller or Fosters, followed by a couple of shots of Bailey's. Take good care Sue, ((()))'s, Mike

Sheryl, Thanks for reminding we caregivers of a survivors goal of wanting to play an active role in things and goal of independent living. Like Debbie, I'm too often guilty of the "let me do it and get it over with" attitude. Where did you buy the rocker knife, it might be a nice gift for my wife? Who's the car guy, you or your husband, or both? I think there must be half a dozen car enthusiasts on my block, a couple of Mustangs among others, and me and my 50 Ford. Your Volare looks like a quarter miler, I'll have to check your picture gallery to see if there are more pics. Keep up the positive attitude and progress, Mike

Thank you all for your kind thoughts and words. I really think that we all have a strong friendship and more than that. I'm grateful to know you all, even if it's only through the posts and e-mails we trade. Now if we could only do something about these temperatures. I guess I've got to be happy we don't live in Fargo. Keep the faith, Mike (Hugs to all, you too Fred)

Karen, We all are together with you, and asking in prayer for the best of healings. Don't forget to try and get some rest for yourself, and know that you are doing all you can. Peace, Mike

Sue, I'm glad you're ok after such a mishap, and I'm glad you had a grandson to hold your hand and cheer your healing. Grandkids are a trip, I always let them do and eat whatever they want, then give them back, wired and dirty. So did Ray give you the business on the fall, repeating your safety rules to you? I hope so. Gotta go, I'm eating sardines for breakfast and some of the mustard sauce just dripped on the keyboard. Later (((to you))), Mike

Ken, Thanks for your blog entry. It humbles me to read your strength and fortitude. You have certainly been dealt more than one person deserves, kudos to you and prayers and good wishes your way for a much brighter year. Mike

My Mother-in-Law's motto: "Don't tell me not to burn the candle at both ends. Just tell me where to get more wax." Hello everyone, I hope you’re all doing well. It’s been very busy around our house for many weeks. We have had visiting therapists, doctor’s appointments and many many hectic days and nights getting back to a routine, and normalcy if there is a normalcy. In the news we have been following the healing process of Congresswoman Gabrielle Giffords. It reminds me of so many of our survivors here on StrokeNet. All the stages of recapturing neuro responses and reconnections are all too familiar. My dear Bernie went through some of the same stages, some worse, some better. Survivors are troopers to a degree, that’s for sure. Unfortunately, for me, I’ve not been able to get to the Caregivers Chat Room on Tuesday evenings. Bernie is on such a close schedule for tube feedings and medications, there’s just not time. She is more impulsive than ever before, and she is less cognitive. On the other hand her quick wit and sense of humor is the best that it has ever been. There are a couple of things that are worse than before, we deal with them. Fortunately Bernie is able to walk, with a walker if I’m watching, without a walker if I don’t catch her in the moment. She has not fallen in over 4 weeks so I’ll just be grateful for that. I guess I’ve got much to be thankful for. Although I don’t think I’m feeling very thankful for the Michigan weather right now, freezing rain, single digit temperatures, frozen car doors, and having to go out in it. On the rehab front: It’s going slow but Bernie is still recovering, in fact today we passed another small milestone. Although there was a strap around her for safety, the therapist walked her downstairs to the basement, she shot a few balls on the pool table, and then walked back up stairs (I see a laundress in my future). Even though we have much work ahead of us, I am so glad, at this point, that all the sub-acute nursing care places turned Bernie down and she came home. My patience has grown thin more times than I want to admit, but I still think she is in the best place for her right now. We shall see….., Till then watch your left side, Mike

Katrina, You are certainly on the fast track, Hooray for you. Wear the sheapskin proud, you worked hard during your hard and harsh times, you're a true inspiration. Great Job, Mike

Debbie, The wallet card, what a great idea. My first 'to do' job for tomorrow will be to complete a wallet card. It sure looks like you've structured some peace of mind into all your New Year planning, relocating phones and such. I know what sister time is like. Bernie had 3 sisters (one passed a year ago). When they visit (even with Bernie in the healing process) it's chaotic fun to watch and listen, they're nuts. They have a great time. Good to read you've got it all together. Hang in there and Happy New Year, Mike

Good Job Ruth, Getting rid of the hospital bed must be cause for celebration for you and for William. I think walking 30 minutes is pretty good news also. Congratulations on being such a strong advocate and teacher. Mike