Mar 12
jsadds1 , Posted on SUPPORT NETWORK Blog

Taking care of my wife who had a stroke

Hello everyone
My wife had a stroke on July 7, 2015. She woke up that morning complaining that her right leg was numb. She was 68 years old then. We have been married 49 years.  I thought she was just having a cramp in her leg, so we attempted to get her out of bed.  She could not get out of bed, and was having a hard time talking.  Called 911, they came and took her to the helicopter at the local hospital.  We live in rural Florida so they took her to Tampa General Hospital which is a 2 hour drive.  They could not take me, so I drove to the hospital.  When I arrived at the hospital they told me she had a stroke from a blood clot in the left side of her brain.  They attempted to get the blood clot, but gave up when it became clear they would cause more damage trying to get to it. So it began.  Every day for the first couple of weeks were hectic with what seemed like a different issue every day.  After she was somewhat stable, a lady came into her room, explaining the options we would have when the time came to be released from the hospital. I am a retired Postal worker and thought I had really good insurance. So my education into today's healthcare system began also.  To make a long painful story short, since I am on Civil Service retirement, and my wife and I are on Social Security, then Medicare becomes our Primary health insurance, and my Blue Cross Blue Shield is our secondary.  So after a certain number of days in the hospital, Medicare stops paying, and I would be responsible for paying for any days beyond the set period Medicare would pay. Ok,, they gave me two rehab facilities to choose from, I took the one closest to home.  What a nightmare.  It was so bad, they were overcrowded and badly understaffed.  I was attempting to work a job and keep up with her at the rehab facility, but gave that up.  One night I asked the RN on duty how many patients she had, she told me she had 33 patients.  Again eventually the days Medicare would pay for came close, so they gave us our options, which were, pay for her stay in rehab or check her out and take her home.  I took her home.  Rented a hospital bed, signed her up for rehabilitation at home.  Went that route for about a year, then they kept telling us that we have what we have.  She can walk a little, maybe 50 feet before she has to sit.  Her speech has come back a lot, she still has to find the words,  She can't use her right arm,after over a year of OT. Somwhere along the line her bladder stopped working, so she has an indwelling urinary catheter.  One of the home health nurses taught me how to change the catheter.  Along with the catheter are the collection bags, and other supplies. 
I haven't even started talking about the problems we have encountered during this time.  We have probably started accepting that this is it, and are attempting to try to make the most of what we have.
I do have a question: Can a stroke survivor fly?  We want to plan a trip but not sure if the pressure and depressurization of the cabin would cause problems.  
  • dkfarrow
    I cannot answer your question but I can relate to your story. It's so close to our story. My husband had a stroke on May 24, 2015, (age 68) in Destin FL while on vacation. Had to airlift him to Pensacola ICU. His stroke was on the right side of his brain. We were there for a week and then transferred him back to GA. After LOTS of therapy he can walk with a cane, but he cannot use his left arm/hand and he has severe left eye neglect. I, too, am a CSC retiree. Fortunately, we did have a good experience with inpatient rehab. Since then he has has a seizure (now on meds for that) and he broke his left hip last Sept. We've been through the therapy routine again! After 2 years, I think we've finally resolved ourselves that it is what it is and that it could be worse. I hope you get to make your trip ... I would love to hear how it goes. Sometimes it helps to hear the story of others and realize we are not on this journey alone.
  • Steffy 1964
    Steffy 1964,
    I too cannot answer your question. I don't know. I was 50 when I had my 4 hemorrhagic strokes. This site has shown me, I am not alone on this journey. This morning, I walked a 1k for The American Stroke Foundation. I had to use my cane, but at least I could do it. Not everyone is as fortunate as me. I cried the whole way . This was my second chance having a life, and I am going to take advantage of it. My strokes were Sept. 14, 2015. Since then we moved from California to Ohio to be with our Grandsons. Sorry we drove we didn't fly. We were very lucky because my husband was a Teamster and was able to retire at age 50. I wish I had a answer for you, but I don't. It's just nice to know, there is a whole group of us just trying our best to survive with our limitations.
  • fluffy
    I cannot answer the 'can she fly' question.....However: the 'therapist' in me wants to say: start out with smaller trip plans, rather than flying (at first)....Don't give up on flying, but could you look forward to a......Cruise out of Miami that goes to some spots of interest for you both? Or....Would this feel like a 'come down' for you? My Dad lived 11 years after a severe stroke, but we took him on good road trips for almost a decade. I suggest to you to 'start out small' and build up to bigger trips, if possible. For you own sake, it would be beneficial for you to experience 'travel' with your wife now that your and her world has changed. I wish you both ever so much luck......You both need things to look forward to, that I know for certain......We all would love to here what journey you take, and how it goes -
  • Chuck3e
    jsadds1, I have known stroke survivors who have flown, however, this is a question for your doctors. Ask your primary care doctor first and if not satisfied then ask the surgeon who worked with your wife. There are things that need considered that the doctor MUST be involved with: the condition of person, length of flight, reduced oxygen level in the cabin (cabins pressurization is maintained at around 8,000 feet), ability to get down the aisle to assigned seat (those aisles are so narrow you won't be able to be beside her walking down them), ability to sit for duration of flight (blood clots due to that inactivity are major concern), stowage of assisting devices like wheelchairs, to name a few. A doctor's approval would be essential, I think.
  • Amitkumar
    Flying of stroke patients needs some prelimillary fitness by physician of blood pressure and pulse and aclamatisation test.
  • Sewing4u
    I will pray for you both.
  • AHA/ASA Sarah Ismail
    AHA/ASA Sarah Ismail,
    I agree and think that the best thing to do is to consult your doctor first who will be able to give you the best answer.
  • elissa
    I understand exactly what you are going through, and believe me you have my deeply heartfelt sympathy. My husband had no risk factors for a stroke but due to a freak fall while awaiting knee replacement surgery, he had a very minor stroke in May of 2015. Unfortunately the hosp. he went to was not stroke certified and overnight blood backed up behind the tiny piece of plaque that broke loose in the carotid artery (his heart rate was in the 30s but his cardiologist refused to put in a pacemaker) and the hosp. did nothing until I insisted a vascular surgeon come the next morning. He told me sadly that it was then too late to take out the small piece. So we started a journey much like yours. He was 65 at the time. We have govt. retiree BCBS same as you and encountered the same prob. of being put out after 3 weeks of rehab. They told me he was too much for me to take home--he weighed 240 and I and half that--but I brought him home anyway and took care of him in a hosp. bed with home health which lasted 8 weeks. The therapy was not very helpful because he needed more equipment but they did get him to stand up at a counter for 20 min. His neurologist got him back into the same rehab hosp. which fortunately was very good in the therapy dept. They got him walking up to 60-70 feet very slowly with a walker. They referred him to a BITS (brain injury transition services) program at a large hosp. which said that if the orig. hosp. had sent him there the morning he went down, they could have taken care of it and he would have been OK. How sad. Anyway, I drove him to that program for 8 months 3X/wk for 3 hours for PT, OT and ST (he could speak OK and his memory was good but he still needed speech and some cognitive work in analytical reasoning and. hand/eye coord.) He graduated from ST, was put out of OT due to insufficient progress with use of left arm and hand and finished the PT prog. They had him walking up to 160 feet with an AFO device to help with the severe tone (spasticity). They tried 2 different meds for the tone but both had horrendous side effects incl. hallucinations, reckless behavior (trying to get up and walk without help) and aggressive behavior. He got approved for botox injections in the arm and leg to help with the tone. This has helped some. They had him able to go up and down curbs so we thought we were on our way. After being released he started home PT (no OT ever came) and was making progress but fell and fractured a vertabra (L-1). Meanwhile he developed atrial flutter (similar to fibrillation) even with the pacemaker another cardiologist put in and had cardioversion, then minor foot surgery. Then he had another fall which resulted in severe back pain which put him in the hosp. on morphine for 3 days, then on to a different rehab closer to home (big mistake) which was probably as bad as your experience. I took him out after 10 days and he started home PT again. However, the back pain prevented him from progressing well so he had a back procedure which did not work. The back/hip pain (which has finally been determined to come from the periformis muscle--he gets massages when I can afford it) coupled with the now severe fear factor had him revert to a very, very slow and tentative walking with a walker. He had gotten up to walking 200 ft. or more at a very nice pace and was working on walking with a cane with the PT. Now he doesn't want to go anywhere even to appts. He refuses curbs now and balked at the front door threshold. We got a very expensive Bioness L-300 (still paying for) to help with the walking. The AFO was not really satisfactory, but the Bioness is not all we hoped for. He has very limited use of his left hand: can hold objects while the r. hand does the work--he is left handed. He needs help with nearly everything; however, I am making him do what he can like it or not. I can now leave him up to 2-3 hrs. Every day I do some therapy with him. His PT has been cut down to 2X/wk and will end in another month. Then we are on our own. The PT recommended a neuro recovery center that has a robotically controlled leg device and harness to retrain the gait. It is called a robotic gait trainer I think. This place does not take Medicare so we are self pay at $75/session for the 1st 10 sessions and then $85 or $90/session. He really feels good walking with it. They change the amt. of weight the person puts on the treadmill as the situation allows and does the same with speed and stride. You might want to look into a place that has one. Look under neuro recovery on the internet. There is also not too far from us a neuro recovery gym that is non-profit and charges only $30/mo. for unlimited use of the gym. My husband went until his fall and back issues but is not at the level now to benefit from it. However, we hope to get back to it. There is help out there, but you have to look for it. If you get a good PT, he/she can help you. Ours has been very helpful and has helped him get his balance back and is working on curbs and 1 or 2 steps (since we have a sunken den in the middle of the house). I will pray for you both and keep you in my thoughts. If you have friends and family willing to help, let them. I get a sitter once a week and meet a friend for lunch and shopping or just visiting over coffee. Our roller coaster journey has taken a toll on me (back issues and wrist tendonitis) as I am sure it has on you also. They all say to take care of yourself but that is easier said than done. I get really down at times esp. when I am tired. Sometimes he sleeps well and sometimes he is up 3X/night asking for help with the bathroom. He is not overly motivated to do his therapy and his vocabulary has a lot of I can't, stop, no more, must sit, must stop, I'm going to fall (which is isn't) etc. His therapist tries to get him past all that but it is ingrained. I don't know where we will end up, but I do know not to believe them when they say you are as far as you can go. We have proved them wrong before and I hope we can do it again. I hope you can also. Don't give up. May God bless you both.
  • Infobug
    Quick answer: yes, I fly. Now you'll want to know the particulars. I'm a married female, age (now) 72 who had a right-brain ischemic stroke just before Thanksgiving in 2i015. Following left-side paralysis, I spent about six months in various local hospitals including hospital-based rehab centers. We live near San Francisco and thus were able to consult doctors at Stanford. (I'm also a retired civil servant and thought my coverage was super (at least before the stroke.) My spouse, also civil service, ended up sleeping most night on a pull-out bed and now does most of the housework, bless his heart. He was able to take a leave of absence but eventually left his demanding job. I'm dramatically better but still require help with some things...and thanks to computers, I can type and have social contacts with my far-flung friends. When I asked my doctors if I could fly, the answer was a unanimous and enthusiastic yes....we've gone on four trips since the stroke, and usually get great treatments by airlines as I have a pacemaker, am met at the airline counter by a wheelchair, and usually get onto the plane first without causing other passengers any delays. Summation, yes, you can ask about airports with family restrooms as they don't all have them. Practice inflight restrooms if you think that will be used...Ifind them too small for a second person. Avoid pretzels, your wife does not want to choke in-flight. And take a sweater or light blanket...planes can be cold. Inflatable c-shaped pillows aren't a necessity, but they are useful to keep necks from jiggling. Most of all, keep a sense of adventure! It's not the life we chose...but trust, me, its better than the alternative. And bless you, Mr. Spouse. You are the unsung heroes of our terribly odd medical system. Without you, we'd be but the proverbial creek, with you adventure is out there!
  • lawnmower028
    Hi as I sit her in brighams and womens hospital in Boston MA I look at my 31 year old girl friend of 8 years who just suffered a major stroke in the right hemisphere I have no idea how I can help her and support her the best way she needs without smothering her is there anyone her who has been throw or can give me any advice. As of this minute there is no prognosis regarding the severity of long lasting disabilities I just don't know how best to help her until there is a clear line other than showing her love and support emotionally.
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