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Stroke Caregiver - female
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About SarahR

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  • Birthday 06/30/1948

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  1. SarahR

    Approaching 15 Yr. Stroke Anniversary

    June 1, 2004 Gary suffered his brain stem stroke at the local hospital, while awaiting tests to find out why he passed out at home that morning. A nightmare of mistakes followed and he was transferred to a larger hospital in Denver where he spent the next three weeks in a drug induced coma to reduce swelling on the brain and further damage. I was told he had very little chance of survival, and if he did survive he would never work again, let alone walk or talk. It was recommended that he be placed in a nursing home, which would have surely ended his life and was not going to be an option for us after checking them out. He spent 3 months in a rehab hospital in Boulder, CO and when insurance was slow in processing claims and I was complaining about the lack of proper care, they released him to go home. A lot of ups, downs and in betweens over the past 15 years, but he's still here, hasn't spent a single night in a hospital since he came home the end of September 2004, and aside from still sleeping a lot, not being able to sit up by himself, transfer without assistance, feed, shower or dress himself, he has many good days. I'm trying to decide whether I should have a small party to celebrate his 15 years of survival.......any comments, or suggestions would be appreciated. Sarah
  2. SarahR

    Glad you are back home and working on getting stronger....still lots of living to do...keep your chin up!!
  3. SarahR

    Prayers for you, Sue! When it rains, it pours!! You've certainly had more than your share of bumps in the road!! Sarah
  4. SarahR

    I don't envy you having to deal with the cold and the snow.....you need a getaway to AZ again! lol Glad to hear Dan is doing okay....I can only imagine how frustrated those nurses must be! lol Sarah
  5. SarahR

    We're Still Hanging On

    Still here, still surviving, sometimes by only a thread, but we're doing okay. We finally sold the Scottsdale mobile home the end of December, and were able to get Gary's bathroom redone for a roll-in shower. I put that job off way too long and was worried my back would not hold out much longer trying to get him in and out over that tub to shower him. A $3200 job ended up costing nearly six grand by the time I fired first contractor and had to replace him with a handyman to finish the job. Technically, I should have had him rip it all out and start over, but I really couldn't afford that and didn't have the time or patience to take the phony contractor to court for reimbursement.....I was lucky to get him to reimburse me $900 to pay the handyman, in order to get the job done. We had the doorway between bedroom and bathroom widened to 36 in. so it is much easier getting through with wheelchair and I can roll Gary right up to grab bar in shower to pull himself up, turn and sit on his shower chair. He's lost a lot of mobility and some cognitive ability through all this, but we make it work. It's been nice having my youngest sister and her husband in AZ again this winter doing the snowbird thing with their motor home. They have been across the country and back over the past couple years with that new motor home, so are now planning on buying a house south of Tucson and moving down here by Fall. This week they will be in AZ City, which is only about 25 min. away from us, so we will meet up a few times next week and they offered to sit with Gary if I need to get out while our caregiver, Carmen is on vacation to visit her son in Colorado. I may take them up on the offer and go get some acupuncture in Casa Grande. I've had those free coupon offers laying here on my computer desk for months, but never had the time or opportunity to use them. Our daughter-in-law from Colorado was in the area for about 10 days in February for the grand opening of the new Ziggis Coffee in Chandler. She's an area manager in Colorado and travels to the new openings to help with set up and grand opening. Her original travel dates were pushed back by delay in opening, which turned out to be a good thing as she ended up being full time caregiver for our oldest son after his back surgery the end of December. He had two surgeries for spinal stenosis. I talked to him yesterday and he's very disappointed that progress is slow and he's still experiencing numbness all down left side from butt down to feet, and his right foot is numb. He's been on short-term disability for over 3 months and should have been cleared to go back to work this month, but the pharmaceutical company he works for is closing their Colorado operations, so he no longer has a job. He says he can't be on his feet more than an hour or two before his back spasms start and he has to sit again, so not sure if he'll even be able to work again. Since his wife returned home to Colorado she has also been sick with some sort of infection related to her colitis....so not doing well. Please keep them both in your prayers. I'm hoping to get a new computer in the next few weeks, then can start adding people back on facebook. Had some problems with computer virus pop-ups, and lost a lot of contacts. Sarah
  6. SarahR

    New Girl in Family

    Ever since we got back from our Colorado trip in June, Misha (our little schnoodle) has been missing her playmate who visited often while we were away. The neighbor girl would bring her female shitzu mix over to play and Misha loved the company. So, for Gary's birthday I decided I'd try to find a new lap dog for him since Misha prefers sitting on my lap and hanging out with me. On Tuesday of this week we picked up a 6 month old chihuahua mix from a family who had too many dogs and were getting ready to move and couldn't take them all with them. They had named her Lala, but we changed her name to Leila (pronounced Lay-la) because I liked it better. lol Wednesday morning, I took Leila to the vet for her first wellness exam and her rabies and distemper shots since the previous owners had not done any of the shots. The vet checked her out and said she appeared to be quite healthy and she was very cooperative during the exam. We go back in three weeks for the 2nd booster for the distemper and then again 3 weeks after that for her third in that series of shots, spaying, microchipping and removal of a dew claw on back left foot. Our biggest challenge will be keeping Misha away from her after her surgery so he doesn't accidentally cause her to tear open stitches. We may have to kennel him a couple times during that time. Gary is enjoying the cuddle time with the new pup and when she's not on his lap, she makes him laugh when her and Misha are chasing each other around the living room stealing chew toys from each other. She sleeps on my bed at night while Misha sleeps in the kennel at the foot of my bed and she's been real good about going out to potty when he goes out, so that's a huge plus. Sarah
  7. SarahR

    Sounds like things are going along more smoothly than normal.....knock on wood, right? I wouldn't worry about putting on a few extra pounds - it's always easier putting them on than taking them off. I should know - been on that yo-yo plan for decades. lol Sarah
  8. SarahR

    Family Reunion Trip

    As much as I dreaded the long drive back to Colorado, I knew I had to take Gary after his sisters planned a family reunion for the day after the 2 yr. anniversary since our son's death. We also had not been back to Colorado since his memorial service so had not seen (in person) the headstone on his final resting place. Carmen, Gary's current caregiver, went on the trip with us as I can no longer travel any distance by plane or car without help. Gary has gotten more stubborn about doing his share to help with transfers or cooperating in any way when traveling. The whole trip, he absolutely refused to sleep in the car while Carmen and I did the driving. As a result, each time we had to get him out of the car, it was more difficult and more strain on us without his help. We made a lot of stops, leaving him in the car while we took turns making our pit stop or grabbing food on the go, and used a plastic cup for him to pee in and dumped it when one of us went to the bathroom. It was a real pain having to put the visor over windshield to block out any video monitoring equipment at gas stations or parking lots, so we wouldn't get arrested for exposing him as we tried discreetly to hold the cup for him to go. We spent the first night in Santa Fe, NM at a Comfort Suites with less than adequate handicap bathroom...bathtub instead of roll-in shower and of course the grab bars and pull down bench were on the wrong side for him to be able to hold on with his left hand, so he got a wash up next morning instead of a shower. If it were just the right side paralysis that he had to deal with, it would not have been a problem, but the lack of trunk control as well as double vision, makes it impossible. We had five nights in Colorado at a Comfort Suites with the same problem, except they did give us a shower bench to put on opposite end of tub so he could hold on to left side grab bars. We still struggled to get his legs over the edge of tub and getting him out was equally as difficult - thank God there were two of us doing the work. We went to visit Dan's final resting site on the 22nd - the 2 yr. anniversary of his death. We also stopped to visit Gary's parents grave sites and cleaned up the headstones and placed flowers on both sites. It was chilly and windy out so I did not get Gary out of the vehicle - he could watch Carmen and I from nearby in the warm car. We met up with friends afterward for lunch at the local Perkins and did some catching up with them. Our granddaughter came by the hotel later in the afternoon and I was able to give her some jewelry items I had been hanging on to for her and her brother, and we had a nice visit. The 23rd was the family reunion picnic, and also Gary's oldest brother and his wife's 56th anniversary. This is the brother who was diagnosed a year ago with mesothelioma, and the first time we had seen him since he has been through several rounds of chemo. He is doing as well as can be expected with the type of cancer he has, and doesn't look like someone who has cancer. All three brothers and their wives attended as well as all three sisters and two of their spouses. The oldest sister was there, but her husband no longer likes to travel so did not attend. Many nieces and nephews and great nieces and nephews were also there. Our oldest son showed up with a wonderful pork tenderloin that he had smoked on his grill, so we had to try some of it. Overall, I believe there were 75 in attendance - an amazing turnout for such short-term notice. A few hours into the picnic and Gary was already showing signs of exhaustion, so we lasted until about 4 p.m. - that was a good day for him since he had been up since 9 a.m. On Sunday we went up to the casino with our son - it was the casino where our youngest had worked for over 9 years, but I didn't recognize any of the employees and we had not been there in over six years, so things had changed somewhat. The only thing not changed was the machines being as tight as ever. lol We also had a chance while in Colorado to visit with our oldest grandson and his girlfriend and a couple cousins, one who has pancreatic cancer is going through a rough time right now and hopefully will start chemo soon. We headed back home on Monday morning around 7 a.m. and bypassed Denver using E-470 - almost 9-10 miles out of our way but avoided the rush hour bumper to bumper, stop and go through I-25 to get to the south end of Denver. We made great time to the border of Colorado/New Mexico and stopped only once for gas and another for a quick picture for Carmen at the border, and she drove the majority of the day until we finally stopped in Payson, AZ that night around 8...long day for all of us and Gary was totally exhausted. We stayed at a Quality Inn and headed out early the next morning to Scottsdale to check on our mobile home that is listed for sale, and then back home to Coolidge, AZ. Misha was more than excited to see us home again - and his dog sitter was anxious to get her money and get out. lol
  9. SarahR

    Sorry I missed your birthday, but glad you were able to enjoy some time with family. It's always nice to get away, but equally as nice to get home and back to routine. Sarah
  10. SarahR

    Happy Mother's Day to you Asha.....you have such a positive attitude, there is nothing you can't accomplish. Sarah
  11. SarahR

    Amazing Mother's Day Gift

    I was just thinking earlier in the week how quiet it would be again this Mother's Day. Our youngest son is gone, he passed away nearly two years ago.....he was the one who always made sure he did something for Mom on Mother's Day and his Dad on Father's Day. The other two sons are married and have wives who are Mother's so the day is usually spent with their own families. Then Saturday came, and I made my usual short ride to the mailbox, taking Misha (our 1 yr. old schnoodle) along for the ride - it's his big thrill for the day! lol I grabbed the hand full of mail out of the locked mailbox and headed back home. As I sifted through the mail, I saw an envelope from the Donor Organization of AZ and didn't think too much of it, aside from the fact it was in a thicker 5x7 envelope. I assumed they were doing an annual campaign to get people to sign up for organ donations. Upon opening the envelope, I found a letter, a brochure and another smaller sealed envelope inside. There was a note that said "please read letter before opening smaller envelope." I began reading the letter and it explained the process of putting organ and tissue recipients together with their donor families. The letter also explained that if I was not yet ready to read correspondence from the recipient, that I could hold onto the letter and wait till I was ready. or send it back. The brochure had suggestions as to how to correspond with the recipient if we wished to do so, taking into account privacy issues. I proceeded to open the smaller envelope and inside was a thank you card from the recipient of some of Dan's tissue. The person explained that they had surgery and had to rely on tissue donation to complete the process in order to be able to get back to being physically active. They thanked us for the gift of tissue donation and said they would keep our loved one in their thoughts. Wow, I couldn't hold back the tears.......Dan is still doing for others and helping others, even though he is no longer here with us......I couldn't have asked for a better Mother's Day gift. Sarah
  12. SarahR

    Sorry, Sue.....by now you are likely feeling like an all-wheel drive vehicle, having to get over all the bumps in the road. Life isn't fair, life sucks, and yet, somehow you always hold your head up and go on. We can scream to the top of our lungs, pitch a royal fit, get it out of our system and feel better for the moment, and then move forward adjusting to the new normal.....you've been there before, you can do it again. Praying that things will go smoother than you anticipated. Sarah
  13. SarahR

    Golden Wedding Anniversary

    By the Grace of God we made it to our 50th wedding anniversary....nothing fancy, no big celebrations, not even acknowledgement from some of our closest relatives or friends, but we survived. Gary had his stroke in 2004 at the age of 56, going on 57, and a secondary bleed on his 57th birthday. Not a single doctor who worked with him during that time would give him a life expectancy of more than six weeks or at best six months - nearly 14 years later he is still here, and we made it to the 50th anniversary. What do doctors know???? lol Gary's two youngest sisters and one brother-in-law flew out last weekend and were here till Monday. We met them in Scottsdale and they followed us back to our home in Coolidge, AZ. On Saturday Gary slept late (too much brain over stimulation from all the chatter), and after he got up and ate breakfast they all wanted to go to a casino, so we headed out to Harrah's Ak-Chin in Maricopa. I hit a nice sized jackpot, we ate a light lunch and headed back home again. On Sunday, we drove to Phoenix to our son Joel's place where he had prepared a couple smoked turkeys and a fine meal for all of us. It was a fun day, but a lot of over stimulation for Gary again. He went straight to bed when we got home (around 5:30 p.m.) and slept till I got him up around 10:30 on Monday morning. I wanted him to get up and eat before they all had to take off to the airport for their return flights home. Monday afternoon after they all left and it was once again quiet in the house, he napped a full five hours and went to bed by 8 that night. That has been the story of our life for nearly 14 years.....which is why I have caregivers come in a couple days a week so I can get out before I go stir crazy sitting in the house while he sleeps. It's still a bit chilly to start swimming, but I need to hit the pool again to take off the pounds. I had set a goal to lose 50 lb. before our 50th, but only managed to get 40 lb. off, so now working toward my next goal of losing a total of 70 lb. It has not been easy with all the crap I've had to deal with these past few weeks with our former caregiver, who is renting our mobile home in Scottsdale, and refusing to allow realtors to show the place after she had agreed that she would be cooperative when I had to re-list it this spring. I need to get it sold so I can do a roll-in shower here before my back goes completely out trying to get Gary in and out of that bathroom with a tub. I already have areas of the back that feel like something is out of place and need to schedule an appointment to get an MRI, but finding the time is a real challenge as I would likely have to go to Casa Grande to get it done. I have enough problems in my life without her drama and will be glad when I finally get her out of there. I need to hit the shower and try to find a place to schedule a pedicure today before I start tripping over the long toenails. lol Sarah
  14. SarahR

    Sorry, Nancy....you can only do so much for him and if his motivation to be content with his current life isn't there, then it's not your fault any more than it is a reflection of your caregiving. You know the old saying "you can lead a horse to water, but you can't make him drink" that also applies to a brain damaged horse if you know what I mean. I get the resentment all the time from Gary and the constant "when I call, you jump" demands. He laughs and says "I don't care" ..thinking it's all fun and games for him, but I remind him that the time is coming sooner rather than later when he will end up in a nursing home. Then it will be too late for him to care!!! Your feelings are real, accept them and the fact that you can't change things, but you deserve a life whether he likes it or not. Sarah
  15. SarahR

    Another bump in the road, Sue.......won't be long before you're back to your old self and volunteering till you finally need another vacation. Where shall we go next time? lol Sarah