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SarahR

Stroke Caregiver - female
  • Content Count

    47
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    United States

About SarahR

  • Rank
    Associate Member
  • Birthday 06/30/1948
  • Age 72

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  • Stroke Network Email
    Yes

Shared Information

  • Stroke Anniversary (first stroke)
    06-01-2004
  • How did you find us?
    Other

Registration Information

  • First Name
    Sarah
  • State
    AZ

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  1. SarahR

    Missed Anniversary

    Here it is the middle of June already, and I just realized that Gary's stroke anniversary came and went on June 1 and I totally forgot about it - maybe because he passed away in February, we're still dealing with the Coronavirus, and so much more in the news. June 1 would have been his 16th stroke anniversary........but he only survived 15 years and 8 months following that devastating brain stem stroke in 2004. I'll bet his Doctors from back then would be shocked and amazed that he lived that long after telling me he might not live six months; and it would have been even less than that had I placed him in a nursing home. While caring for him at home for 15+ years was no easy task, it sure as heck beat the alternative, and I gave him the best life he could possibly have considering his disabilities. In all those years since the stroke we did our best to accept the new normal and still have a life. While I miss him dearly, I know he is in a much better place now. I will be going back to Colorado the first part of July to make sure they finally get the marker on his grave site and be there for his birthday. I have asked his brother and sister who live nearby to join me at the cemetery and then go to lunch after. We have to wait to do a Celebration of Life ceremony because of social distancing rules - but we need some kind of closure for now, and acknowledging his date of birth at his final resting place next to our youngest son seemed like the right time and place to do that. His former caregiver, Carmen, who now lives in CA will be driving up from San Diego to make the trip to Colorado with me. I didn't feel comfortable making that 16 hour trip alone and she really wanted to go as she always treated him like her own Dad, even calling him her Papa. I'm keeping busy with the two dogs, who will be spending the week that I'm away with my sister in Tucson (she can spoil them rotten). I will try to check in when I return from the trip - looking forward to cooler weather as we've been in the triple digits for a while now and no cooling off till Sept. Pool or no pool, that's still too darn hot!!! Sarah
  2. SarahR

    Prepared for Isolation

    I've had a lot of friends and family checking on me via phone since Gary passed away.....some are worried that being isolated from everyone with this Pandemic right now might be a bit much for me. I've been telling them all "I was probably better prepared for this isolation than most." I spent 15 yr. 8 months taking care of Gary at home after his massive brain stem stroke in 2004. It wasn't easy traveling with him, and I usually only got out a couple hours a week when I had a caregiver to sit with him. It was usually just him, me and the pups anyhow - not like we had a lot of friends or family who visited after the first 6-8 months following his stroke. I'm used to being alone, as he slept a good 16-18 hours a day, and when he was awake, he was total care. Now, it's just me and the dogs, but they do keep me plenty busy - in and out all day long and sometimes during the night to potty (the dogs, not me). lol The first order for no more than 10 people in a group caused the shutdown of my favorite family owned restaurant, so there was no more going out for breakfast. Then, the week before the Governor called the stay at home order I had painters here to paint the outside of house. HOA had sent me a letter requesting it done, and did extend the time allowed after the stay-at-home orders. I was out front watering plants when I saw painters at the neighbors house across the street, so asked for their information and later that day the painter came over and spoke to me through the front screen door (keeping his distance). I happened to mention to him that I had been out to grab a few groceries that morning and couldn't find toilet paper or eggs. The neighbor who had walked over with the painter heard me, and the next morning when I was out front trying to remove our name plaque from front of house, as well as a satellite dish - he showed up with a big pkg. of Charmin and a dozen eggs for me. He also climbed the ladder and took down my plaque and the satellite dish for me in preparation for the painting. What a nice gesture from a new neighbor I had barely spoken to a handful of times. I offered to pay him and he refused to take any money. I promised to pay it forward. Now that the painting is done and the weather is warming up, I'm looking forward to getting in the pool. I spend a couple hours in my back yard every day with the dogs - sometimes in only 20 min. increments as they tend to react to other dogs barking and I have to keep them quiet since my next door neighbors both work nights and sleep during the day. I've already been scolded once by the woman, who texted me that she missed work because my dogs barked the day before and kept her awake. They usually only bark once anyhow before I zap them with the control collars. I don't use the shock one, but either the beeper or the vibration one works well and gets their attention but doesn't really hurt them. I hope everyone is doing well and staying safe. I did get out yesterday to drop a check at the bank, so stopped at local family owned grocery to grab some milk and eggs. I didn't wear my mask because wearing it tends to fog up my glasses and I really need to see where I'm going. lol It was scary when some old man walked up behind me as I was picking up a dozen eggs and I heard him cough; I looked back at him and he had an item in each hand so didn't cover his mouth. I wanted to yell "back off buddy" but bit my tongue and got the heck out of that store as quick as I could. Some people still don't get it how deadly this virus can be. I'll check back in when I figure out what this new normal is going to be....... Sarah
  3. SarahR

    I'm sure you both feel more comfortable with him at home.....and he likely is thrilled to be able to spend more time with you during this lockdown. I can't even imagine how fearful he is of this virus as I know Gary would have absolutely freaked out over it. I hope you are doing okay and taking care of yourself also. Sarah
  4. SarahR

    Keeping Busy

    I can't believe it's been a month since Gary's passing, but it certainly has been a busy month. At times I felt overwhelmed with all the paperwork and phone calls, but got most of it under control now. It seems I'm the only one who was efficient and organized, so a lot of things were "hurry up and wait." I was told by the local Social Security office "It all takes time, don't get ahead of us. You're just one person and we deal with millions on a daily basis." Good to know I'm nothing more than the tiny flea on an elephant's *beep*. They deposited Gary's January social security into our joint bank account on Feb. 12 (2 days after he passed away); and I was told it was okay to pay bills with it since he was owed that from the month of January, so I did just that. Two weeks later, on Feb. 24 they put a freeze hold on that deposit and I had to scramble around getting funds from my money market account in another bank and run to Casa Grande to deposit it in the joint account to avoid an overdraft. Lucky for me I had the funds to do that, but was more than a little teed off that three people told me it was okay to spend it; then the Feds held it back, and to this day have that HOLD placed on it. Gary's pensions from the union were much easier getting switched over to the widow benefit and the one small life insurance policy didn't need the copy of death certificate and paid up in two weeks - quickest and easiest process so far. We had prepaid plans with the Neptune Society for cremation, so they had him for nearly two weeks before they got the death certificate from the county in order to proceed with cremation, then notified me when they shipped him back to Colorado. I got a call from the cemetery back in Colorado when his urn arrived there and they were to tuck him in next to our son at our grave site (prepaid also) and get started on the monument to put on the plot. It will not be ready before our anniversary in April, so I will wait and go back to Colorado the first week in June and have a Celebration of Life service for him then. I have spoken to the American Legion in the hometown in Colorado and made arrangements to use their facilities for the service and luncheon. I've also arranged with a cousin of Gary's to cater the luncheon for us and am praying he is fully recovered from his cancer surgery (removal of toes and maybe part of foot) by then. If not, I'm sure his wife is fully capable of handling the event for him. The fur babies have been especially clingy since Gary's passing. I leave them alone for a few hours at a time a couple times a week to get out for groceries and a little time for me, but when I return home they are all over me and don't want to leave my side. One of my favorite waitresses from the local restaurant where I often go for breakfast or lunch had a birthday last week, so I took her out to the pita place on Saturday night, then we went to the local senior RV park and listened to music where a friend of ours was playing good ole' country music in the park. It was nice to get out just for a bit of relaxation and I slept really good that night. I got notification from the local Homeowner's Association that my house is in need of paint.......like I didn't already know that, but now the pressure is on to get it done. I have 60 days to let them know what color paint I picked out from their list; and since I'm so efficient I had already bought paint to match the existing color and the stucco border wall that I had done last summer, so now I'm hoping I can match that with their color selection (which has changed) as a 5-gal. bucket of that paint was $129 and I can't take it back for refund since it was a custom color. I had planned to start on the trim as soon as the rain is finished this week, but now I have to wait on the color approval from HOA after I send in the form they provided for me to let them know my plans. I'll wait and see if things go smoothly, but won't hold my breath on it, especially since I got their notification on Friday the 13th.... I'm hoping for better days ahead, but for now just going with the flow and trying to find a new normal in my life. It's quiet here ...I'm alone much of the time, but not lonely since I have the two little dogs who keep me going. Sarah
  5. SarahR

    Sue, I'm so happy for you that you were able to do this cruise. I'm also glad that you are home again safe and sound and free from the coronavirus. I look forward to being able to do a cruise again some day, but for now I'm still tied up in paperwork and travels, even within the US, are not in the works until I make the trip back to Colorado to have a Celebration of Life service for Gary in early June. Hope your surgery goes well and you get to do more travels ....maybe we can meet up again for another adventure! Sarah
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. SarahR

    Sounds like you are doing well.....glad everything went okay and you are on the road to recovery! Sarah
  14. 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
  15. 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
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