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azrabbit

Stroke Survivor - female
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  1. azrabbit
    It has been since May that I have taken time to blog about our lives. Many of you have sent messages to check in on us and let me know that you have thought of us and were missing me on the site. It was heart warming to receive those messages. Thank you for caring enough to lure me back.
     
    So, what has happened in the past year....there is so much to tell that I don't know where to start. Our lives have changed in so many ways. The most joyful change was the birth of our beautiful grand daughter, Isabella Anne. She was born last July and we were so fortunate to be there for the birth. We drove our motorhome from AZ to WA and spent the summer camped along the Snoqualmie River. Denny was so happy to be outdoors for the entire summer. He amazed me with all he accomplished. Internet access was poor at best and thus began my drifting from being so active on Stroke Net. We had campfires most evenings, ate a TON of wonderful fish and the dogs and I explored the river daily. Of course, much of our time was spent enjoying Isabella and helping Carrie. I was delighted to find the blackberries all along the river and did my best to pick them every day. The dogs loved them too and would bite them right off the bushes. We had blackberry cobbler often and in spite of all my walking, I think I gained several pounds. I even made balckberry jam - my first time!
     
    After labor day we drove home down the Oregon coast and camped along the way. It was so nice to be traveling again. Then it was back to reality and the heat of Phoenix. My daughter and her husband moved back to Scottsdale in August so coming home was not as difficult as it could have been if they had chosen to stay in WA. They live within a short bike ride of our house and we get to see them often.
     
    Once we were home, I began the plans to purchase Denny's custom made trike. It came from Germany and was made just for him with all the controls on one side and a special calf support for his weak leg. It was a surprise and was supposed to be for his birthday. We made plans to go to California to pick it up and I told him we were going to celebrate our birthdays and enjoy the ocean. We were in the car and not quite out of town when I received a call that my father was very ill and they suspected he might not make it through the day. So we turned the car around and heading to his care home. He was in septic shock from poor cathater care and a severe bladder infection. I won't go through all the details, but suffice it to say, Dad was sent directly to the ER and never went back to that place again. He is amazing and recovered well. I can't beileve he is 90 years old and so strong. He has not had one incident since he was moved to a new facility.
     
    Once we knew Dad was going to be ok, we planned our trip again. It rained the entire time we were there. I was lucky to get us a room right on the ocean WITH a fire place. So we ordered room service, watched the waves and just enjoyed our evening and days. On the day we went to get the bike, I told Denny I just felt like taking a drive. The bike shop knew we were coming and had the bike sitting outside with a big red bow and a sign on it that said Happy Birthday Denny! He was so excited! He took off in the parking lot and I was afraid we wouldn't see him again.
     
    When we got home it was raining again and he couldn't ride for several days. Finally the sun came out and he got to ride. After making sure he had his cell phone, plenty of water and some snacks, I kissed him goodbye. Mind you, this is the first time in nearly 2 years this man, who up until his stroke rode his bike or ran every day, was on his own and making his own decisions on where to go and when to come back. After about an hour, I saw him sitting on his bike at the curb. He called me on my cell phone and told me he was going to ride some more. I was so happy for him. When he came home an hour later, he was SO tired. I asked him how it was. With the biggest smile I have seen in a long time, he said, "FREEDOM.! YES!"
     
    This bike has been better than any therapy or medicine. He is riding all over. He is using the time on his rides to take photos for his blog about traffic and bike saftey. His blog is pretty neat - and his vocabulary is growing each day. He is mentally and physically stronger than ever. I am so thankful.
     
    The other big change is I took a full time job. I ended up closing my consulting business due to the fact that I couldn't travel and leave Denny home alone. The cost of private health insurance was killing us - we were spending over $20K just on insurance, deductibles and copays. So I started to look for work. God smiled on us again. A friend of mine was at our annual Christmas Eve party and had just started a new job earlier in the year. I asked her about her job and told her I was thinking about going back to work. She stopped dead in her tracks and said, "I think we have a job that would be great for you." But, they were not going to fill the position until May. I didn't think much of it, but told her to keep me in mind. Meanwhile I started working on my resume. About three weeks later she called and asked me to send in the resume. Long story short - I was hired and started work on Feb.18. I was so worried about Denny and afraid that he would get depressed or bored if I was gone all day. We made plans for him to go to a couple support groups and tried to schedule some routine tasks around the house so he had something to do every day. I don't know why I was worried - he has jumped again in growth. Not only does he find plenty to fill his days, he has started cleaning the house!!! Yes, ladies - even the bathrooms. He knows how much I love clean sheets - so every Friday, he strips the bed, washes the sheets and remakes the bed. Granted, sometimes the sheets are on the wrong way, but they are clean! I don't know how he gets all those pillow cases on with one hand, but he does it.
     
    The Denny who always loved taking care of me, the one I thought I lost to the stroke, is coming back day by day. He is still the romantic he once was. For valetine's day, he rode his bike to the store and bought me flowers, champagne, strawberries and chocolate to dip them in. For our anniversay, he had the champagne in a bucket of ice and sitting next to the tub, candles lit and music playing when I got home from work.
     
    So what's next? Denny is still part owner in a river rafting company. So, we have plans to go white water rafting next week with our kids. It will be our first time on the river since the stroke. Denny won't be able to run the boat like he used to, but one of his partners is going to come along and captain the boat for us. We are really excited to go. I will be sure to post some photos.
     
    Thank you again to all my dear friends here who cared enough to keep in touch. I hope this novel didn't bore you. For those of you who don't know us, maybe this post will encourage you if you read my earlier blogs and see just how far we have come in Denny's survival. Don't give up hope, it really can and does get better.
     
    I posted some photos in our gallery of his new bike and of beautiful Isabella.
  2. azrabbit
    Denny has continued with his letter writing campaign. Wow - is he ever getting some interesting replies. I have thought many times to jump in and "help" explain things to the recipients, but then decided I would let it ride out and see what the responses look like. It seems as though some people really care and try to connect and decipher what he is saying. Those that don't, just don't reply. Or they reply with an email that has "?????????????? Sorry - don't know what you are saying."
     
    He was in his office for several hours the other day. I went to check in and see how he was doing. Asked him what he was up to. "I bogging" he said. "Bogging?" I asked. "Hard," he says. Still not quite getting it (it was a slow brain day for me) he showed me what he meant. He was trying to register online with the local paper to be a community blogger! I couldn't believe it. I told him that was a good idea, but maybe something we should do together since most blogs are more than just one or two words. He thought that would work out ok.
     
    Continuing on his environmental bent and his frustration with our dependence on oil, he decided we needed to buy a "red" car. Our car is brown. I couldn't figure out 1) why did we need a red car and 2) what was wrong with the brown car. Turns out after lots of back and forth guessing games, he was trying to say he wanted us to drive a "GREEN," as in hybrid, car. We went round and round on this one. Guess who won? Not me. We are now the proud owners of a "Red" - actually it is slate colored - Ford Escape Hybrid. Denny just keeps telling me, "Good car, red, cool, map, tunes." This means that it is good we got a green car and it is so cool because it has a navigation system and satellite radio! Still, our friends were a bit confused when Denny told them about his new red car and took them to see the new slate colored car! It is really strange to be in the car and have it be totally quiet.
     
    I thought things would calm down a bit, but today we were off to Best Buy. He wants to buy a small camcorder that he can use with one hand. This we figured out after he drug out all his other video recorders and pointed at each one saying "Big." Then he kept holding up his one hand by his face and saying "Small." "You want a small video camera?" I finally figured out. "Exactly!' he exclaims. Then he shows me the Best Buy ad for a small $99.00 video camera that can take 30 minutes of video. I asked him what he needed it for - thinking maybe he was making plans to take movies of the new grand baby in June. Boy, was I wrong. "Traffic! Bad, lazy driver. Bog!" So I guess his "community bog" is going to be a video "bog."
     
    That's all for now. I'll keep you posted when he gets his first "Community Video Bog" up and running.
     
     
  3. azrabbit
    Denny has always been a community activist and environmentalist. As a person who made his living by photographing nature, exploring nature and helping others discover nature, he is keenly protective of wild places and human propelled methods (bikes, hiking, kayaking, etc) of discovery.
     
    One of his major goals in the past was to document bike paths and rate how pedestrian friendly a community was as we traveled through them. Then he would use the good ones as ammunition when we returned home and he resumed his activism with the city council or legislators. After we were hit from behind by an SUV while riding our bike one day, I suffered a pretty significant head injury. My helmet saved my life that day! Then a few months later a friend of ours was killed while cycling by a teenager driving a truck. Denny went into high gear fighting for cyclists rights. THEN he had the stroke and his fights took a back seat.
     
    Not any longer! A few weeks ago a story ran in the local paper about a woman who is frustrated with our traffic and efforts by the city to control speed by installing round abouts at intersections. She set up a website to lobby for wider roads, faster speed limits, less lights and overall encourage the use of cars / suv's are the primary mode of transportation rather than light rail, buses or carpool lanes. After all, we live in Scottsdale where the car is GOD and nobody shares a ride here. Denny couldn't believe she was getting so much press. He was incensed at her efforts to increase traffic and speed it up rather than decrease traffic and make it safer for pedestrians and cyclists. Then he read in the paper about a young girl who was killed while walking by a hit and run. The driver only received three years in jail. That did it, something clicked for Denny and he has been hard at work on his computer.
     
    Denny has begun a letter writing campaign to the newspaper and to the city council. Mind you, with his aphasia, his letters are far from what they are used to receiving from him He has punctuated them with photos and set up a webpage showing images of traffic accidents, examples of good and bad bike paths side by side and short messages. I am so proud of him. He doesn't care that his letters aren't grammatically correct or even spelled right. He is fighting for his cause with a passion. Here is an example of one of his emails to the mayor:
     
    "scottsdale bad bike
     
    thanks 96th street"
     
    Then he added the like to the webpage he has set up. Translated this means - "Scottsdale is bad for people riding bikes. Thank you for installing the bike lanes and round about on 96th Street."
     
    He has done a similar thing with his anti-war campaign - complete with music.
     
    Lesson to learn here? Many people (not the people on this list) wrongly assume because a person has speech aphasia they cannot process complex thoughts. This is simply not true. While they may process things differently or more slowly, it doesn't mean they process thoughts with any less passion than the rest of us. I am so proud of Denny and his passion to change the world.
  4. azrabbit
    Denny has such a great sense of humor and is genuinely proud when he accomplishes a new skill. I replied to one of Jean's posts about Denny's response to anyone telling him what a great job he did - he grins and says, "Pat me back" while patting himself on the back. I love when he recognizes how hard he is working. Tonight, he recognized how hard I was working.
     
    The past few weeks have been crazy at our house. I have had landscapers in to help me clean up the yard that hasn't been attended to for over a year due to Denny's stroke. Now those that don't live in the desert might not believe you can let a "yard" go that long, but here in AZ we have gravel yards and we can ignore a lot. However, the AZ Strokenet group is coming to visit on Saturday and I just HAD TO HAVE THE YARD CLEAN! So I hired a company to come and to a clean up and haul away all the things that Denny had collected during his "Sanford and Son" years. They finished the back yard today.
     
    Denny was out tonight with a friend for a movie so I took advantage of the great weather to sit outside and enjoy a glass of wine by the pool with the outdoor fireplace lit and the waterfall flowing as I admired all the work that was done. AHHHH - I was so relaxed. Clean yard, clean pool, kind of clean house and a good glass of wine. When Denny got home, he joined me pool side. "AHHHH," he says. "Satisfaction." I asked him what he meant. In his apahsic way, he listed one word at a time, the things I did to make our lives good. I wish I could quote him verbatim. Here is the gist of what he said - one word at a time, followed by a pause and accented with gestures - a HUGE accomplishment for Denny:
     
    You
    Nice
    Yard
    Nice
    Typing
    Talking (holding his hand to his ear like a phone)
    Computer
    Smart
    Money
    Nice
    Mother, GOOD Mother
    Stan (my Dad who I care for as well)
    Daughter, GOOD!
    Girlfriend, no, wife
    Love you
    Good
    Satisfaction
     
    As far as I am concerned, I just got a big "pat me back" for my role in our lives as caretaker, housekeeper, breadwinner, mother, daughter and wife.
     
    It just doesn't get any better than this!
  5. azrabbit
    It has been one year and a few days since Denny's stroke on New Year's Eve 2005. What a roller coaster ride it has been. I started New Year's Eve this year like a CNN broadcast with a day and year in review, complete with pictures, videos and memories - all in my mind of course. When it got too painful to relive I headed to the New Year's Eve party on the chat site here. It was good to visit with the survivors and caregivers and know that life does go on. Determined to not sit and stew in my sadness, I opened a great bottle of wine, poured some into a beautiful crystal goblet and headed for the hot bath that Denny had prepared for me. Fixing my bath was something he did often before the stroke. When I would return home from traveling for my job, he would have champagne on ice, strawberries and a hot bath waiting. Talk about being pampered. It was really sweet that he thought to do this for me on New Year's Eve....it had been over a year since he pampered me. I will admit the bath water was a bit salty from the tears.
     
    The bath preperation was a signal of change. Denny, always the caretaker in our relationship, made my world spin right. Daily he would rise early, bring in the paper, make the coffee and bring it to me in bed. Yep ladies, he really did! He managed all the bills, the outdoor household chores, cars, trucks, boats and ran his business. He supported me in my business by managing my web sites, banking, taxes, layout and printing of marketing materials and of course, the baths! Fast forward to 2007, all those things are now my responsibility.
     
    We are fortunate that we had savings to help us through the past year, but I am now faced with the need to 1) find a job that has healthcare benefits or 2) work like heck to build my business back up so I can afford to pay our medical bills and premiums. The problem with option two is I would have to travel again - extensively - and I am not willing to be away from Denny that much. It is just too hard on both of us.
     
    So I have dusted off the resume and started sending it out with carefully worded cover letters. I don't remember the last time I had to "apply" for a job. It is all pretty daunting. Through all of this, Denny has decided he can do something to make money. The speech aphasia alone is a big problem. He thought he could pass out carts at Wal-Mart and practiced, "Hello, here's your sticker" accompanied by a big smile. We both laughed and decided that may not be the best job. He was a successful photographer before his stroke and still takes amazing photos. We are looking into creating some custom greeting cards with his desert photos and flower photos that we might be able to sell. He also used to have an outdoor recreational outfitting business at the Grand Canyon. His company was the first company permitted to provided guided mountain bike and day hikes at the south rim. Since guiding tours requires both his hands and his speech, he decided that won't work.
     
    Then it happened. He came into my office with his notebook and drawings, gestures and repeating the words "bike, two, bike, two, money, job, me." After a lot of quizzing, I finally figured out he wanted me to write down the word "pedi-cab." He headed back to his office and was busy on his computer. A few hours later he emails me a photo of a pedi-cab and the message said, "hi honey, job, me, money." That night at dinner we "talked" about how he thought he could get a job driving a pedi-cab around sporting events and concerts to give people rides. He was determined that he could do it. While he is strong enough to get his own bike around, I am not sure he could manage pulling along another 300 or 400 pounds of people. Then I told him the pay you get was generally from tips and that the more you chatted up the clients, the better the tips. He shrugged and kept eating. So I decided we would role play a bit.
     
    Me: "OK, I just finished my dinner and I need a ride to the concert. I walk up to your pedi-cab and what do you say?"
     
    Denny: "Hi!" BIG GRIN
     
    Me: "I need a ride to the theater."
     
    Denny: "OK" Bigger grin and gesture to get in the pedi-cab
     
    Me: "What's your name?"
     
    Denny: Apologetic smile "Don't know, sorry, thank you."
     
    Me: "Are you from around here?"
     
    Denny: "Yes, No, Waaaay Waaaay away, Brrrrr cold, bad." This means Illinois and it was too cold there.
     
    Me: Just smiling and not sure what to say.
     
    Denny: In his very best Brooklyn accent, "So, howyadoin?" BIG BIG SMILE
     
    We laughed a lot and decided maybe pedi-cab driver may not be the right job for him. But it was such a good exercise in seeing how he processed the questions and was able to reply and for the most part, get his point across. He is still busy everyday trying to find a job. In the meantime, I have started to encourage him to do jobs around the house. Things I was too worried to ask him to do because I didn't want him to fall or get hurt. He has figured out how to use the leaf blower, strip the bed and wash the sheets, do the dishes, and his favorite, put food in the bird feeders outside. I drew the line at putting the chemicals in the pool when I found him flat on his back, reaching with all his might to get the chlorine floater out of the pool.
     
    Denny and I will both keep looking for employment. I just know that 2007 and has to be better. When I read Asha's update on the message board where she went from wondering if life was worth it two years ago to the positive and encouraging person she is today, I knew that 2007 would be better. For the first time, I am actually looking forward to the future. Thanks Asha for the proving to me things will and do get better.
  6. azrabbit
    Bonnie got me started on this by encouraging me to hid my guilt monster along with the dust bunnies. I did a needle work piece of the original poem when my daughter was little. After Bonnie's post, I decided to resurrect it and revise it for this new time of my life.
     
    Blessings I Reap
     
    Caregiver, oh Caregiver, come shake out your cloth
    Empty the dustpan, poison the moth,
    Hang out the washing and butter the bread,
    Sew on a button and make up a bed.
     
    Where is the Caregiver whose house is so shocking?
    She's loving and caring and encouraging walking.
     
    Oh, I've grown shiftless as Little Boy Blue
     
  7. azrabbit
    I was just reading Sue's blog about marking time and noticed her's began with a reference to Heather's comments. I love how interdependent we are with each other on the site to help us "talk" out what we are feeling.
     
    I understand how you feel Sue, and most times I can be happy marking time. But some days or moments I find myself longing for things to be different. It is usually after we have attempted to do something in the "new normal" way that we used to do with ease. Or after visiting with friends and then experiencing the let down of knowing it will be days before I have intelligent two way conversation again.
     
    I was listening to NPR on Saturday evening, the Prairie Home Companion show, and had to turn it off. They were singing a song about a woman who was 91 and she had apparently been the care giver those entire years. I almost crashed my car thinking - OH MY GOD, is this what the rest of my life will be like? Single motherhood, care giver for Dad and now Denny? :Sob:
     
    I started this blog with every intention of looking forward, so I won't let this blog be about what I miss. After all there are length limits! :Ask: But how did I get from looking forward with a positive outlook to looking forward with longing for change? Do you think that some people are just destined in life to be the ones looking out for others? Do they ever get their chance at being cared for? How do I turn around the lonliness and find that satisfaction again in my life's circumstances. I remember my Mother always telling us to be content with what we have. When we would wish for something, she would tell us "People in Hell want ice water too!"
     
    I am going away on business this week. For the first time since Denny's stroke, I will be leaving him for an extended period of time in the care of another. I am ashamed to say I don't think I am going to miss being here. I will miss him and knowing that I can walk into his office and see that he is ok and doesn't need anything. But, I am so looking forward to sleeping alone, getting dressed alone with no one watching or asking me what I am doing. Walking at my own pace through the airport, eating when I feel like it, or not. I just hope I can go without the guilt monster rearing up to bite me in the butt!
     
  8. azrabbit
    :party: We are both thrilled with our new (used) motor home. We got a later start than we had hoped, but managed to get up the hills and around the curves to the campground. The first place we stopped was full so we drove another 40 miles and camped at Fool Hollow Lake State Park. I must admit I was a bit skeptical about making my first camping trip at a place called Fool Hollow, but what the heck, I have made a fool of myself many times before.
     
    Denny really enjoyed the ride up and I didn't even scare him with my driving. He liked the "high" windshield - which means he liked riding up high. The view is great up there. The dogs each eventually found their spot and settled down on the ride. The male thought that all 90lbs should be on the dashboard so he could see out the high windshield as well. Denny couldn't understand why I didn't think it was safe, apparently a 90lb dog flying into his chest during a fast stop didn't worry him.
     
    I am SO PROUD to say I backed the rig into the camping spot on the first try. :cheer: Denny kept telling me, "You good honey." I guess he was proud of me too. He knows how worried I was about driving and parking such a big vehicle. It rained every day but we didn't care. We sat under the awning or inside listening to the rain and a wide variety of music. Denny worked with his SaeboFlex and I read three books. He helped with dinner one night by carefully arranging all the chopped vegetables and chicken apple sausage slices in the foil packs. Then I gave them each a splash of red wine and some seasoning and he closed them up and we placed them on the grill. YUM, they were good and Denny felt great that he had helped.
     
    We got him a scooter and he was SO happy to have some independence. He would load up the basket on the front with his gatorade, put on his hat and say, "Bye Bye" and off he would go. The park was all paved so he rode all around. I asked him if he spoke with anyone on his rides and he said he did. I asked him what he talked about and he gestured fishing and then smiled and said, "Fish GOOD!" I am so proud of him for getting out on his own and not depending on me to speak for him. :big_grin:
     
    He had some frustration trying to use his camera. We absolutely have to find a professional quality digital camera he can hold with one hand. So far I haven't been able to find a remote shutter system for any of his current cameras. He isn't happy with a point and shoot model because he is used to setting all the F stops and other settings manually. He still knows how to do this to get the best shot and gets frustrated with his limitations. We did get a few good shots when the sun was out and I posted them in the gallery.
     
    We went to a great presentation by the Rangers on the reintroduction of the Mexican Grey Wolf - formerly considered extinct.
     
    I don't know if it was the change of scenery or what, but Denny was talking a great deal more than usual. Our last evening we were making plans and he just amazed me with the words he was saying. He actually said, "OK, so presuming....." and then he would pause and gesture to indicate tomorrow or later, then he would add "sell home..." and so on. It was the first time since the stroke that I felt like he was really able to say what was on his heart. I couldn't sleep that night for a darn - I was so happy. When we got home the next day, I was telling him I had to take my Dad (also a stroke survivor) into the doctor on Monday. For the first time he said, "OK, When?" In the past he has always said, "Where?" and pointed to his watch when he meant "When." I stopped dead in my tracks - looked at him and asked him if he knew what he just said. He grinned and just kept repeating "When When When!" :friends:
     
    So, we are ready to go again. The next trip will be another first. I ordered the hitch system for our tow vehicle - a 1987 Suzuki Samurai Tin Top 4 x 4. So we will have wheels when we are parked. This time we plan a visit to Chama, New Mexico to visit our good friend - the pastor that married us.
     
    Looking forward to making more memories!
  9. azrabbit
    We made it to New Mexico and back. Driving the motor home went well and I even towed a little 4 x 4 car for us to run around in when we arrived. We stopped at farm stands and bought fresh vegetables and just picked apples for our dinner. When we arrived at the camp site it started to pour rain. So, I hurried to unhitch the tow car and get the RV hooked up to electric, water and sewer. Walked the dogs and cleaned the mud off them and then fixed Denny a quick snack. Then I finished setting up camp by putting out the awning, chairs, getting Denny's scooter unloaded and put together and lastly put out the ever important ground mat to keep the dirt out of the camper. The rain stopped and we decided to sit outside and listen to the river. After all, I paid extra for a premium spot along the river. Within moments, a man on a tractor comes chugging up the river and begins to shore of the river back at the campsite next to us. Well, I am sure it was needed or else he wouldn't be disturbing us while we enjoyed our premium spot. Denny was tired, so we went back inside and he got ready for an early night.
     
    The next day, I moved the HUGE wooden picnic table so it would be easier for Denny to sit at and set up the grill and fire ring. We were sitting outside, watching the dogs enjoy the river when here comes the tractor again. Needless to say, I was peeved. :Tantrum: I went up to the office and complained that my premium spot was far from premium. Long story short, they offered me another site, very secluded and about 1/2 a mile up the river. Yep, you guessed it, I had to take down everything I put up and put away everything I took out. Rehitch the little car, load the scooter, unhook electric, water and sewer and move. THEN set it all up again. The new spot was so lovely and indeed secluded. But not secluded enough to prevent the MALE RV'rs in their one piece coveralls from huddling together to WATCH me set up our camp AGAIN. Did they offer to help - heck no! Just stared.
     
    We eventually got down to the job of camping. Denny figured out how to fish with one hand. He would cast with his good arm, then hurry and stick the pole in the tube of his sling on the other hand, then reel in with his good hand. Worked great as long as I was there to rig the line, bait the hooks and get the tangles out when things didn't work out quite right. Oh, did I mention I carried the chair to the river bank, the fishing tackle box, the pool, the snacks and managed two large dogs on leashes. Can you say SHERPA? That is just how I felt the entire trip.
     
    We took one day to visit a Women's Cooperative Woolen Shop. They spin the wool and weave the most beautiful rugs. I decided I deserved one for all the work I was doing while on my "relaxing" camping trip. We visited another farm stand and filled up our freezer with roasted Hatch Green Chili. If you like spicy - I can take care of you. Also bought another bushel of apples to take home to make apple sauce and apple butter.
     
    We arrived home at 3:30pm to an urgent message from one of my clients needing information for a 1pm conference call the next day. You all know the drill, unload the hubby, unload his medical gear feed him, medicate him and get him to bed. THEN, unload the perishable things from the RV. Come back to the computer and start work. Got to bed at 1am, up at 5am but was able to deliver what they client needed by noon the next day with an hour to spare. My work schedule has not slowed down. The next day, I get a call from the home where my Dad lives (it is a residential group home) telling me he was ill. Dad is also a stroke survivor and I was his caregiver for 10 years prior to my husband's stroke. Drop everything, arrange for someone to be with Denny and leave to take my Dad to the VA clinic. If you have ever had to get medical care on a walk in basis at the VA, you know how long we waited.
     
    Dad had a UTI from the catheter he has to wear because of his prostate cancer progression. They prescribed antibiotics, then sent us to the lab, then back to the clinic and then to talk to the pharmacist and then to pick up the meds. 5 hours later we were on our way. Saturday the home calls again just as Denny and I were sitting down for dinner with my sister 60 miles away from Dad's. He was very ill and needed to go to the ER. Load Denny in the car again and off we go. Drop Denny at home, get him in bed, medicated etc. and then go get Dad. 2:00am he is admitted to the hospital and I head home. Oh yes, did I mention I had that bushel of apples crying out to not be wasted. Got the applesauce made and in the freezer. Gave up on apple butter.
     
    So, now I am trying to figure out how to run my business so I can pay our bills, take care of Denny, take care of Dad and keep sane.
     
    ARRGGGGHHH - I would love to go take a nice relaxing bath, but I want to wait until Denny is snoring so I can REALLY relax, that is unless the phone rings and Dad needs something. :snorkel:
     
    Photos of the camping trip in our gallery...
  10. azrabbit
    I wasn't going to blog again until we got back from New Mexico and I had something to write about. Since I am here again, obviously that changed.
     
    As you all know we have been enjoying Denny's increasing language skills. Some things are coming out pretty humorous. For instance when I asked him what he wanted to eat the other night, he replied, "Itchy Knees." Took a while and with his help pulling his eye back into a small slit and saying, "Ah So" I figured out he wanted Chinese food. We both had a good laugh at that one. His other new word is "jalopoly" (sounds like monopoly) which means jalopy. We bought a small 1987 4 x 4 Suzuki Samurai to tow behind the motorhome and that is what he calls the car. The trouble is our son likes to drive it and every time we come home and it is gone, Denny asks, "Where my jalopoly?"
     
    However, last night we were watching the movie The Notebook. Actually I was reading the book club book and Denny was half asleep and half watching the movie. At the end of the movie, he took my hand and said, "I never forget YOU honey. Never forget." Well the tears started to pour. Forget that the movie is a tear jerker as it is, but add in his heartfelt expression of love - I was a basket case. He went to sleep rather quickly after that, but I have been up all night. Whew!!!
     
    As a "caregiver" we often feel as if our love goes unnoticed and that our partners are just plain dependent on us. Just yesterday we had a tiff because he was trying to clean and organize the garage which translates into start the job so Ellen will get out here and finish. I was tired and didn't want to clean the garage - I wanted to just enjoy my Saturday. Then to end the day with his deepest feelings expressed so beautifully - here I go again, tearing up.
     
    Thanks for listening - hope I have time for a nap today since I spent all night basking in the warmth of his words. :cloud9:
  11. azrabbit
    Denny has been out of therapy (speech, ot & pt) since the day before his PFO closure on July 12. Prior to the closure, his standard speech consisted of a few words and not more that two together with regularity. We noticed during our camping trip that he was finding more words. His speech has consistently improved over the past few weeks. Even he has noticed. Tonight while we were at dinner I asked him if he realized how many new words he had and how often his "sentences" were three or more words. He said he did and then just grinned the best grin! The other night he actually asked me, "Honey, can you scratch my back please?" I almost fell out of the bed.
     
    We talked to the neurologist's nurse and let her know. We wonder if the closure of the PFO has allowed for more oxygenated blood to reach the brain or if the heart is functioning better allowing for better blood flow from the unaffected side of his brain. Since his closure was part of a research study, we thought it was important to note.
     
    Denny has claimed that the improvement is due to the beer he has been drinking on occasion in the evening. He pointed to his tongue and said, "Beer, loose." :cocktail: Who knows, but whatever it is, I am LOVING having him talk more.
     
    The absurd part is when he is chattering at night in bed. After he gets in bed and we both get settled, meds taken, hand splint on, pillows all adjusted and the house is quiet, I take up my book to read. Lately he has lots to say. So it is now read a paragraph, translate and respond, wait until I think he is sleeping to start reading a paragraph only to have him think of something to talk about. After all these months of longing for him to talk to me, I find myself wishing he would be quiet! It doesn't last long when I remind myself of all those silent nights.
     
    We have made our plans to go to New Mexico next month. Denny has decided he is going to go fishing. He is not nor has he ever been a fisherman. I can imagine how much fun I am going to have since I believe baiting the hook requires two hands. Stay tuned for the fish report! :fishing1:
  12. azrabbit
    :tired: The last two weeks have been full of planning, purchasing, packing and praying! I have read the manual for the motor home - several times. Turned things on, turned things off, put water in, drained water out, cleaned, rearranged and have just about worn myself out. Denny desperately wants to help so I have worked hard to identify things that he can do without falling. So far his favorite thing has been sitting under the awning (which I just figured out how to open today) with a cold drink and pointing out things for me to do. Then he says, "Sorry honey, me help." I have really missed him doing all the things he used to do for us.
     
    We are planning to leave tomorrow for our shake down cruise. My son took me out today to practice backing up 31 feet of fiberglass. I am proud to say I was successful in backing out of my driveway (long and curved with a steel gate to maneuver through) and back in again. So after loading the fridge tomorrow and some clean clothes we will be on the road.
     
    I have checked several National Forest campgrounds and also some state parks. I have narrowed the choice to two. The first one doesn't have any hookups, but the rig is self-contained and has a generator so it would be ok. We are used to primitive camping and being frugal with water usage from our days sailing, but I think since it is our first time out with this rig, I would rather not be so remote and have a few creature comforts. Denny doesn't care, he just wants to get out of this heat. He is so sweet, he just keeps walking by saying, "Motor Home, YES!" He has been busy charging all his camera batteries. I have to remember to pack his tripod so he can manage the camera with one hand. He has about 4 lenses packed to take along. That is my new job, photographer assistant. Before the stroke, he wouldn't let me near his gear, now he is happy for the help changing lenses etc.
     
    I just hope that I have the energy to set it all up and fix myself an ice cold drink! :cocktail: I'll try to post photos when we return. Wish me luck with backing up! :out_of_here:
  13. azrabbit
    :Clap-Hands: We have decided to hit the road and get out of this Arizona heat. Denny had a successful PFO Closure last week so we are no longer tied to Coumadin and the requisite blood tests. He also has a break from six months of physical, occupational and speech therapy.
     
    We sold our beloved sailboat because it was no longer an option for us. While I was fine at the helm and trimming sails - I was worried about single handing a big boat in an emergency. It was also extremely difficult for Denny to board the boat and get below decks.
     
    So, we thought we would just take off in our big Dodge truck and camper for cool country. What the heck, he can practice his "home" therapy just as well in the woods as he can at home. Didn't work, the camper door opened in the wrong direction and he couldn't hold on to anything to climb inside. Plus, if you have ever climbed into a cab over camper, you know what I mean when I say that it was like a wall on an obstacle course for Denny. Heck, with my short legs even I have a hard time climbing in bed. SO, that is up for sale.
     
    On to option three - How about a Motorhome???? I know - glug glug goes the gas. But, it sure would make travel easier for us. AND the added bonus is being able to take the dogs. Not many hotels are too pet friendly when you check in with two weimaraners, one 50 lbs and one trying his best to reach 90 lbs. So, I researched them for about a month and a half and found just what we wanted online. After sealing the deal, my wonderful son and his buddy flew back to Chicago to pick it up and drive it home for us. We are anxiously waiting for them to arrive. Denny is aphasic and also has apraxia. He has asked me at least 15 - 20 times the past few days, "Motorhome? What day Motorhome?"
     
    We have been busy making plans for our first trip. Of course, I have to practice driving, parking and backing up. One of our traveling buddies is going to come and teach me all the ins and outs of hoses, pumps, generators and more. I guess this is part of the stroke life that is hard for me. Learning to do all the things that Denny used to do for us.
     
    Until next time, moving on!
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