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Jhari

Stroke Caregiver - female
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    73
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About Jhari

  • Rank
    Member
  • Birthday 01/01/1955

Shared Information

  • Stroke Anniversary (first stroke)
    11-24-2011
  • Interests
    reading, sewing, baking, animals (have 2 cats, Molly and Maggie)being with my grandkids
  • How did you find us?
    Google Search

Registration Information

  • First Name
    Joni
  • State
    PA
  • Country
    United States

Recent Profile Visitors

6,873 profile views
  1. Happy Anniversary Jhari!

  2. Happy Anniversary Jhari!

  3. Jhari

    Nancy, my heart goes out to you. I hadn't been on here & then when I was I didn't see your posts anymore & wondered if you were OK. I'm so glad you're getting help for your depression. You've gone through a lot & been so strong. It sounds like you're on the road to recovery, but I know there are a lot of ups and downs. Don't give up!!
  4. Happy Anniversary Jhari!

  5. Happy Birthday Jhari!

  6. Jhari

    Nancy, yeah I am getting pretty tired of going the extra mile. it just seems that things that should be noticed and reported, aren't. What would happen if I wasn't there to catch things? The same thing that happens to the majority of people there, it just gets ignored until they eventually get so sick that something has to be done or they die, Today I changed mom's pull-up and it was disgusting. It was saturated with bloody urine and the smell was off the charts! Her socks were wet, too, and blood-tinged. So I got the nurse right away and she called the urologist. He wanted to know what mom's doc had treated her with a couple of weeks ago. The bad part is that we were waiting to hear from the urologist before she was treated! So I stayed until the order for Keflex came in. Mom's doc will be in on Thursday and I need to talk with him about all of this. The infections, the low blood count. It's just not easy, is it. Hope to catch you in chat in about 20 minutes. Thank you Yvonne and Fred for your concern and prayers.
  7. Jhari

    More frustration

    I was so upset that I missed chat last week. By the time I remembered it was 8:45 and I was just too tired to log in. I am frustrated (as usual) with what's going on with mom. With the last UA C&S, there was still bacteria in the urine. Prodius, but now don't know what the plan is. In the last week, mom has seemed to be sleeping more and just seems weak. Bloodwork was done last Tuesday and her hemoglobin was 10.7. The doc ordered 3 occult blood stool specimens. Usually mom has a bowel movement every day, but of course last week she had only 2. Today she had another and they were all negative. The bloodwork she had done this morning showed that her hemoglobin was down to 10.1. This concerns me because when mom had the tumor in her colon, her hemoglobin was low. Because they couldn't find the cause for a few months, she had to have a transfusion every 2 weeks. If her hemoglobin got to 10, she had a transfusion. The nurse called tonight and the doc says they don't do transfusions until the level is down to 7.5, which seems pretty low to me. So I am really upset and frustrated. Mom is so pale and her normally red lips are light pink. But there is nothing I can do.
  8. Jhari

    Sue, I feel sad for you. I'm glad though that you're just letting it out. Sometimes we just have to let it hurt. I do not show a sad face in public either. In private though, sometimes I really "wail". Sending you a hug.
  9. Jhari

    Cindy, I am so sorry to hear of your mom's passing. My prayers go out for you and your family.
  10. Jhari

    Fun With Aphasia

    Aphasia is a horrible thing, not only for the victim, but for the ones who care for them. I just don't understand how everything gets so mixed up in the brain. Mom says some really off the wall things. On good days, she can say quite a few whole sentences that make sense. Today was an ok day, but I just wanted to share some of the things she says. I got my hair-cut last night and usually she notices something different. She hadn't said anything about it, so I asked her, "Do you see anything different about me?". She looked and smiled, "Oh, your lipstick." I said, "Look, I got my hair cut!" To which she replied, "I know, that's what I said." Later on, as we were eating lunch, she pointed to her cup of tea and said, "Go ask the older children to put more onions in this." I asked, "Do you want more hot water in your tea?" and she said, "yes, please, just a little". I am so happy on a day like this when I can figure out what she's saying and I usually can. It makes me sad when people act like she's crazy when she says things like this. But because most of the staff have heard me communicating with her like this, they have learned to do the same. Today she finished her antibiotic and tonight her iv will be finished also. I have asked that they bring her lunch to her room from now on. She eats in the big dining room for breakfast and the little dining room for supper. It was ok in the dining room for lunch, but because I like to visit with other residents and staff, it was a little hard for mom. Alot of noise really makes her anxious, auditory overload, and she couldn't hear me, and I couldn't make out what she was saying. In her room, it's just her and I, she is relaxed and we have great conversations. Today was a good day and yet when I layed her down for a rest, she said, "I'll do this now, but I want to go home, do you hear me?" It breaks my heart when that happens, but after she has slept for even a little while, she's all over it. I think when she gets tired, it's just hard to think. Makes sense, because I can't even think straight when I'm tired. So all in all, pretty good day. I was so glad for chat last night. It's just nice to be in touch with others that understand. I told one of the residents at the home about this site. She is young (60's) and had a stroke before Thanksgiving. She is going home on Friday and has alot of questions. So I told her about us, hopefully she'll hook up. Hope everyone is staying warm, I'm not. So ready for Spring.
  11. Jhari

    Frustrated with doctor

    The last time I posted, which has been almost 2 months, mom still had bacteria in her ur ine. but they were not treating it. We had an appt. with a urologist on Jan. 8th. Before we went there, she had an ultrasound of her bladder done . A week later, when we actually visited the dr., she had a ct scan and he also st. cath'd her for a UA C&S. I was there when he did it and the urine was dark and cloudy and the last bit was thick and white. He said that just may be because she doesn't drink enough .The home didn't hear anything back from him and I dropped the ball, I should have been on top of this. So this morning, I got a call from the RN at the home. The urologist had called, and mom has an infection. She had 2 different kinds of bacteria and he was going to treat her with penicillin, but she is allergic. So he had the nurse get another specimen and they won't have results until Monday. I am so upset. Why would it take 3 weeks to get this information? Yesterday when I visited mom, she was at the table at noon, sleeping in her w/c. I woke her up and she said she wasn't hungry. I told the nurse and the aides to not take her to the dining room when she's like that, if she's tired, just let her sleep. I layed her down in her bed, and she fell asleep right away. She slept the whole 2 hrs. I was there. Today I took food in, hoping that would whet her appetite. She was in bed and sleeping. I woke her and she said she would eat. So I put the soup and sandwich in front of her. She took 2 or 3 bites and then she fell asleep. Again she slept most of the time. She did get up once and used the bathroom and went right back to bed. So she has been sleeping alot. When I got home, I called the urologist, but they had left the office at 12 and won't be in until Monday morning. I just feel so frustrated. Does anyone else think this is strange, that it would take 3 weeks to call. So I'm just trying to calm myself down, there's nothing I can do about it until Monday now.
  12. Happy Birthday Jhari!

  13. Jhari

    Up and down, as usual

    Once again, it's been almost 2 months since I've posted anything. Not much has changed, still up and down. Mom had a UTI since July. She had several courses of Macrobid and everytime they rechecked it was still there. So last time (about 3 weeks ago) they tried Gentamycin IV . When they rechecked it showed she had a colonization of another bacteria - Prodius, I think. They are only treating her with cranberry capsules, we'll see. I guess since I have posted last mom was in the hospital. My sister-in-law came to visit on a Friday, stayed 4 hrs., brought cds of my brother in hospice and funeral. She said she didn't show them to her, I don't know for sure. Saturday I came in and she was there again. She told mom my brother had died, mom was crying and saying, "Oh no", quite upset. I finally had to ask her to leave. She did, but not before arguing with me ( in front of mom) that mom deserved to know the truth. I think I have told you that whenever mom asked about Dale, i told her he was very sick and went to heaven. Sunday night the home called and said they were sending mom to the hospital in an ambulance, it was midnight. So Earl and I got up and went right to the hospital. Mom had gone into a-fib and it took until 4 am to get her stabilized. She was there 2 days. They also found she still had the uti and may have had a slight heart attack. It was a very upsetting couple of days. When she came back from the hospital, she was on Amiodarone. Since then she has been quite lethargic and wants to sleep most of the time. She had an appt. with the cardiologist, but it was cancelled. It is so hard to get in touch with the drs. and then to have them listen to you. I think maybe she needs to have her antidepressant increased or start a different one. It's just very frustrating, which you all know. I hope everyone is doing well. I'm sure very busy going into Christmas.
  14. Jhari

    Better Days

    Yesterday mom's sister and her daughter came to visit. They have not seen each other in over a year. I was a little concerned over how it would go. Mom was taking a nap when I got there and I let her sleep until the company got there. When they did come, I got mom up and we went out to the little dining room. I think mom did ok, but she had trouble getting the right words out (of course) and they are not used to it. Same response as most people - "oh my, she's so confused". But all in all, it was a good visit, they only stayed about 40 minutes. When we all left, mom was in a good mood. Today I tried something different. I waited until after lunch and went to the home. Mom was lying down, ready for a nap. So I told her I would be back later, she was ok with that. I was gone about 2 hrs. I went to WalMart and on the way back, I got 2 cups of coffee and 2 donuts. When I got back, mom was up and sitting by the nurses station. We sat and had our coffee and donuts. Things seemed ok. I took mom to her room. She started getting angry, was trying to tell me something and I didn't understand. I told her I had to leave and she said, "why?" I told her my husband would be home and I was going to fix dinner. She acted really disgusted. Finally she said, "Just go then". I told her I loved her and left. I don't understand what she wants. I think maybe she thinks I'm going to take her home. Sometimes she seems to comprehend and understand things and then it switches back so fast. Sometimes within the same conversation. So when I got home my stomach felt like it was in a ball. I just hate leaving her like that, but I know from experience nothing helps. I can't make her happy. Tomorrow I guess I'll go in the morning, I'm trying to switch things up a little, depending on what I have to do that day. I just wish I could understand her more. On the bright side, we have had wonderful fall weather this week. Bright sunny days, and cool nights. Yesterday was our 9th anniversary and although we did nothing special, maybe we will do something Monday, since there is no work that day - Columbus Day. Hope everyone is doing well.
  15. Jhari

    Thanks for the encouragement. I don't know how you did it, Sue, with both your mom and husband. I guess you just keep going - and praying. Mom was a little better yesterday, but then she got real angry again. She said, "I want you to go home". I said, "Do you want me to leave now"? and then she said, "No, no, no". I think maybe she wanted me to take her home. She also told me I hurt her and I don't know what I did. I think sometimes she gets really frustrated when I take her out among other people and talk to them. I involve her too and that may make her even more angry. I don't know. Mom's sister is planning on visiting her today. She lives 50 miles away and has Parkinson's. They haven't seen each other in over a year. Her daughter is bringing her. I don't know how that will go, it depends on what mood mom is in. I plan on being there, but sometimes I wonder if it's better if I'm not there. I just don't know anymore. I will keep on doing what I'm doing, regardless of my feelings. It is my job and I feel it is my responsibility to make sure mom is getting good care and being treated well. I watched a video on Strokenet yesterday on a support group for people with aphasia. It made me cry. I just wish mom would try, but at 85 I guess she feels what's the use.
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