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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

    thank you all for your kind words ....Gary is in a better place now and I am at peace with that. He is flying high with the angels and is reunited with our youngest son. I am slowly getting over the bronchitis - doc put me on steroids and other meds for a week and I go back for a follow-up on Thursday of this week. Dogs are hanging on me when I'm sitting in recliner. They require more attention now as they too miss him dearly!! Sarah
  2. SarahR

    Heavy Heart

    It is with a heavy heart that I felt the need to inform friends from the stroke network that after having a massive brainstem stroke 15 years and 8 months ago, our beloved Gary passed away in his sleep last night after a short bout with flu like symptoms. Memorial services will take place later in the spring in Colorado - for now I can't think straight and in much need of a nap. Sarah
  3. SarahR

    I'm happy for you that you can sing.....I've never been able to carry a tune ...can't sing or hum on key...lol Good that you will have Trevor and Alice there for a visit, and you're safe from the fires. Been seeing the horrible pictures of the devastating fires........so sad!! Sarah
  4. SarahR

    Sue, I'm so happy for you that you were able to spend Christmas with some of the kids. Gary and I sat home alone on both Christmas Eve and Christmas Day - weather was cold and rainy here, so we watched a lot of Hallmark movies.......no big deal , we're still eating the leftover ham in soup. lol Sarah
  5. SarahR

    We are so sorry for your loss......may he rest in peace, and may you cherish the good times with your brother. Sarah and Gary
  6. SarahR

    Temps are Cooler While Life Heats Up!

    The temps are cooling off here - instead of triple digits, we're down in the mid-90s during the day but 70s at night. The water in pool is staying around 75-80 degrees, so most of the time too chilly to swim unless I try mid-day when the sun is really hot. Can't complain since my friends in ND are dealing with 2-3 ft. of snow right now and much colder weather. 🙂 Trying to find placement for Gary has not worked out well. All of the suggestions from "A Place for Mom" were for places that either didn't have opening or one that had two older gals who would not have been strong enough to handle him. He's 6'2" and weighs between 210-225, so a caregiver that is under 5' ft. tall and barely weighs 100 lb. dripping wet would be a problem. We looked at a memory care facility and at group homes, none of them worked for Gary's needs. I finally put a call in to Hospice of the Valley to see what options they had available, and they got him signed up for Palliative Care - providing a social worker once a month to assist us with resources. She put me in touch with local facilities and agencies and I contacted a private home health agency in Casa Grande. Since our other caregiver, who we've had for nearly 3 years, took off for two weeks and didn't really want to come back, I was without a caregiver for nearly a month. I had to do something soon. The new gal came last week Tues. and Thursday and she seems to be good with Gary and caught on to his routine very quickly. She's sending a different gal this week Tues. but she will be back on Friday, so we'll be getting 6 hours a week at much less than I was paying Carmen (because of paying 2 hours travel time each day). It's not as much time as I would like, but better than nothing. They say "when it rains, it pours" and that expression surely fits the past few months. Our daughter-in-law was recovering for several months from her initial surgery for cancer, followed by septic shock, failing kidneys, dialysis, etc. She was finally able to go back to work full-time last week. I heard this from our Colorado son when he informed me that he had been off work for neurological testing to find out why he couldn't feel his feet and was losing feeling in hands and having trouble focusing. He had surgery last winter that initially was supposed to help nerves in spine for the problem with his feet, but it turns out the recent testing revealed that he has CIDP - something like Guillain Barre syndrome. He went through four sessions of infusions this week to see if that would help, but will have a wait and see before trying other options. He is on short-term disability (from his new job) now but may have to go on long-term disability. He mentioned that if the treatments didn't work, he may be coming to Phoenix for treatment at the Mayo Clinic. I had hoped we could get to Colorado before colder weather set in, but found out last week when I got oil change and tires rotated that I needed new tires - which I hadn't anticipated this soon, so trips are out for now. Some days it feels like life really sucks - other days, I toss up my hands and say "it is what it is" and go on! Sarah
  7. SarahR

    Tough Decisions

    It's been a little over a week since Gary had another fall. It's about the sixth time since we moved here two years ago. He doesn't get injured in the falls because I'm always there to break the fall, but can't always lift his dead weight to avoid it when he starts going down. This last time, he waited until right after his caregiver left to inform me he needed to use the toilet. She had let him sit and watch t.v. for several hours while she did some dusting and cleaning floors and then did his leg massage, so he hadn't napped and was very tired. I knew it would be a difficult transfer to his wheelchair to get him in to the bathroom, but tried to talk him through it. His brain was in the "OFF" position and he wasn't getting it - so instead of pushing up and over, he pushed up and straight forward going head first toward the floor. The full force of his weight was too much for me to get him back down in the chair and I ended up lowering him to the floor. Once he is on the floor, he is like a fish out of water, especially when he's tired and the brain is in the "OFF" position. There was no getting him back up on my own. I spent a good half hour trying to move him back toward his recliner chair so I could at least sit him up and let him lean against it - he pushed back too hard and moved the chair out of the way, so that wasn't working. He still had to go to the bathroom and we had already wasted time trying to make him comfortable until I could get help. I tried to call a neighbor who was home but they weren't answering the phone - probably both sleeping since they work evening and graveyard shifts. I called the non-emergency number for the fire department and while they have been very responsive in the past, this time they were out on an emergency call and had another lift assist after that. We could have waited as much as an hour or more for help from them. I put us on the wait list but continued to try to find a neighbor to help out. An hour and a half wait could have resulted in one big mess to clean up if he had to wait that long to use the toilet. I finally texted another neighbor and asked if anyone was available to help me get Gary up off the floor. She responded immediately "I'm on my way." Between the two of us we used the gait belt and tried to move him closer to the television stand (something sturdy that he could grab hold of), but he was determined to do it his way and kept trying to raise up and on to his power chair. Nothing I was saying was registering in his brain - it was Gary's way, or no way at that point and we finally got his butt on the chair where he could use the arm of the chair to push up the rest of the way, but not without straining a muscle in his lower left side (good side). I thanked the neighbor for helping and immediately got him into the bathroom and with the assistance of the grab bar on to the commode in the shower area. I didn't feel the strain in my own back until later when I tried to put him to bed for the night and he could do absolutely nothing to help so I got the full brunt of his weight getting him from his power chair and on to the bed. I gave him some Aleve for his pain, but was afraid if I took anything for my own pain I wouldn't wake up if he yelled at night when he had to urinate. Vicious cycle !! In the past week, his back has been healing with help from the Aleve and using the shower massage on it when I shower him and the massage cushion when he's on his recliner. Mine, however, hasn't improved a whole lot and now I'm faced with either trying to find a place to put him while it heals or possibly long-term care for him as I'm getting too old and out of shape to do all the lifting without his help. Today we are headed to Chandler to check out a Memory Care facility and see what they have to offer and if they will "break the bank" in order to get the care he needs. Not looking forward to it, and already feeling like I've failed him - even after 15 years of caregiving for him on my own. I know I shouldn't feel that way, but I think it's a natural reaction. Will blog again when I know more...... Sarah
  8. SarahR

    Sounds like you are doing well.....glad everything went okay and you are on the road to recovery! Sarah
  9. SarahR

    Nancy, you do what you have to do! I go through similar situation with Gary not wanting to do his share in helping with transfers or feeding himself. He gets stubborn or just plain lazy at times, and I have to threaten to leave him home from casino if he doesn't want to do his share. I guess he thinks I'm Super Woman and can just lift his dead weight on to the wheelchair. Last trip to casino, he got agitated at some people who were blocking walkway and reached out and grabbed some gal's rear end. I had to apologize for his rude behavior and she said "that's okay," but it's not okay. Times like those, I wish I had left him at home!!! I hear where you're coming from .....it's a daily struggle to give them a somewhat normal life without their cooperation!! Stubborn is as stubborn does! Sarah
  10. SarahR

    Happy for you that all went well.....you are one tough cookie, and we hope to have you around for a long time to come! Take care, rest while you can, and look forward to seeing you back on here posting again soon. sarah
  11. SarahR

    Celebrating Gary's 72nd Birthday

    Tomorrow, July 8th Gary will turn 72.......hard to believe that he almost didn't make it past his 56th birthday the year he had his stroke. Sometimes I wish I remembered all the Doctors names who treated him at Swedish Medical Center in Denver, CO, especially the ones who said if he survived the initial brain swelling he likely would not live six months - shows how much they knew about the human spirit...lol Tomorrow I will take him out to breakfast at his favorite casino, let him play the slot machines for a couple of hours, and he will likely nap the rest of the afternoon. He still sleeps a good 15-18 hours a day. On another note: We've had a good couple of weeks with the news that our daughter-in-law came home from hospital after 26 days, and is continuing dialysis for the kidneys and physical therapy on an outpatient basis. While she is now cancer free, she gave us quite a scare after the second surgery when she went into septic shock and the kidneys took a direct hit - she had acute kidney failure. After they finally got the sepsis under control she went through at least 10 rounds of dialysis before they finally decided she could go home and continue with outpatient treatments. She's still sleeping a lot, but doing a little better each day. We so appreciated all the prayers as they do work miracles. Sarah
  12. SarahR

    Daughter in law had rough night after 2nd surgery (to remove blockage), and they moved her to ICU this morning after blood pressure shot up. She's heavily sedated and on IV with antibiotics and fluids and fighting septic shock. Son is really worried. Wish I could get away but not possible right now. Will update if anything changes! Sarah
  13. SarahR

    Just a quick update: Daughter-in-law is back in surgery again this morning - after a week in hospital and trying to recover from surgery to remove part of colon and surrounding lymph nodes, she had rough time. ... Couldn't pass solids through the intestines - and after x-rays showed twisting and blockage they decided to go in again and try to clear the blockage. She will be in surgery for several hours and we won't know more for at least 4 hours. Prayers still welcome! Thanks, Sarah
  14. SarahR

    Asha, Her mother is in S. Dakota and just had back surgery, so not able to travel. Sarah
  15. SarahR

    We Never Stop Worrying

    It's funny how we never stop worrying about our kids, even though they have their own separate lives and have not lived under our roof in years. Our oldest son had his back problems and underwent surgery back in December, went through a painful rehab process and we worried that he would end up on disability as it took a long time for him to be able to even walk without a walker. He wasn't sure he would be able to go back to work again, especially since his employer at the time was moving out of state and he'd have to look for another job. It's not easy switching jobs once you turn 50 and have had health issues, but he lucked out and got a really good job. He's been training in Chicago and is now back home in Colorado while his wife is going through some serious health issues. She just underwent surgery on Friday after a routine colonoscopy revealed a malignant tumor. She's doing well after surgery but won't have results of latest biopsy till next week some time. If anyone can beat it, it would be her - - she's a tough cookie, but that doesn't mean we don't worry about her and our son. His new boss gave him the time off to be home with her through the surgery and some of the recovery, but I'm sure he'll have to head back to Chicago to finish his training. I'm feeling like I should be there to help out, but can't even make the trip to Colorado unless I have someone along to help with Gary - between a rock and hard place on that one! Our caregiver, Carmen was going to be away to CA for 3-4 weeks, and now it's going on more like 5 weeks and she's not coming back until around the 20th, which means I will have gone nearly six weeks without help...........ugh!! Sarah