mikev

Stroke Caregiver - male
  • Posts

    78
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About mikev

  • Birthday 10/30/1944

Shared Information

  • Stroke Anniversary (first stroke)
    04-08-2010
  • Interests
    Making sure my wife doesn't get hurt, our six grandchildren, My 1950 Ford, Portrait water color painting, woodworking when I get time, playing pool, long walks on the beach (just kidding), people with a sense of humor, TSN and staying connected with the support
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Registration Information

  • First Name
    Michael
  • State
    MI

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  1. Happy Anniversary mikev!

  2. Happy Anniversary mikev!

  3. mikev

    I've lost my sweet Bernadette

    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
  4. 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
  5. Happy Birthday mikev!

  6. Happy Birthday mikev!

  7. Hi Mike how are you? It's nice to have you aboard! Welcome to Stroke Net!

  8. Hi Mike how are you? It's nice to have you aboard! Welcome to Stroke Net!

  9. Happy Anniversary mikev!

  10. 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
  11. 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
  12. mikev

    Happy Birthday

    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
  13. mikev

    Much better

    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
  14. mikev

    Purple Mist

    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
  15. 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