door60 Posted November 12, 2006 Share Posted November 12, 2006 As a lot of you know, I have been care giving for my mother for 3 1/2 years since her stroke. In August, her H.U.D> apartment fianlly came thru, and she moved out in September. We were all really excited. Well in the beginning of October, all of a sudden she started falling -- 3x in a week !! She was hospitalized (no broken bones thankfully), and went to rehab for 4 weeks. She came back on Tuesday, and she had evening help 9PM - 9AM. Well yesterday, her aide came, and my mother had her do the laundry. In the meantime, her friend who was with her was leaving, but had a bad feeling, and returned to her apartment -- My mother was face down on the floor. Over 3 years post stroke, and close to 3 years since her 1st and last seizure, she had another seizure !! I am so devastated. We really all wanted this apartment thing to work, because living with us was impossible for all of us (including my mother) Any words of advice ? My mother is now in the hospital weak from the seizure, and I am beside myself as I don't know what to do. We are planning at least 1 month of round the clock care for her when she gets out of the hospital. The problem with round the clock care is that I don't want her money to run out before she does. Dorrie Link to comment Share on other sites More sharing options...
kanderson Posted November 12, 2006 Share Posted November 12, 2006 dorrie, i am sorry to hear about your mom. i too hopes she recovers from this set back. does she not qualify for state aide, that could help with aides or home health under medicare. good luck and dont get to discouraged. it will get better. keep the faith. kimmie Link to comment Share on other sites More sharing options...
swilkinson Posted November 13, 2006 Share Posted November 13, 2006 Dorrie so sorry to hear about your Mum. As you know Ray and I have had many set-backs in the seven years I have been caring for him and I know how this feels. It is back to taking one day at a time, doing the research (what is causing the seizures?) making plans, getting help into place. So sorry it has happened just as you were finally confident that living on her own would work for her. Sue. :friends: Link to comment Share on other sites More sharing options...
door60 Posted November 13, 2006 Author Share Posted November 13, 2006 The state aid in NJ is just about non-existant. When you run out of $$, and go on Medicaid, the most home health aide care you can get is 20 hours a week. I 've been talking to my representatives for 2 years, and I always get the same Budget cut-back story. Meanwhile, I keep pointing out that it is cheaper to care for someone in their home, as opposed to in a facility. Somehow it does not get thru to these thick headed legislatures. I am going in a little while to visit my mother. She's just so weak from the seizures. Like I mentioned she just got out of rehab 6 days ago. I don't know if she should go back in, or we should just get help 24/7 for a month or so. My mom's so tired of all of this, and so am I. Dorrie Link to comment Share on other sites More sharing options...
kanderson Posted November 13, 2006 Share Posted November 13, 2006 dorrie i know how tiring and frustrating this is but you cant stop. what is causing her seizures? recovering from a stroke is a long and tough road with setbacks along the way. one step forward, maybe 2 steps back. i am so sorry this is happening. your mom probably still needs more therapy and care for the seizures. keep fighting for your mom, she needs you. i pray it gets easier for you. kimmie Link to comment Share on other sites More sharing options...
dorothy Posted November 14, 2006 Share Posted November 14, 2006 Oh Dorrie, I am so sorry I am praying for your mom as well as you ! Sending you tons of thoughts and prayers. thinking of you ! Be strong ! Link to comment Share on other sites More sharing options...
fking Posted November 14, 2006 Share Posted November 14, 2006 Dorrie, lets just go one day, one week at a time, she can survive this like she did the stroke. Hopefully, the money will last as the condition improves. You have fought so hard for everything she has so far, until I know blessings will continue to flow. Link to comment Share on other sites More sharing options...
kanderson Posted November 14, 2006 Share Posted November 14, 2006 dorrie, i know how hard this is for you and your mom, tell her to be strong, this is another of lifes test, we have to endure, keep fighting for her, she needs you in her corner. i am thinking and praying for you both. hugs to you both. can you find a social worker to talk to, they might be able to help you. kimmie Link to comment Share on other sites More sharing options...
cindy Posted November 14, 2006 Share Posted November 14, 2006 Hi Dorrie, I'm really sorry for you and your Mom. My husband had his first seizure a little over a year after his stroke. Then a couple of months later he had two more. His last siezure was Jan. 1, 2005. The doctor kept him on the dilantin he was taking and added Lamictal. He hasn't had one since. I want to add that the last seizure was both a curse and a blessing as it jolted something in his brain and he started to progress in his recovery. Both his cognitive and speech ablilities. Do you think maybe a change in medication might prevent another one? Just a thought and our experience regarding the seizures. I hope and pray that you will find the financial aid you are seeking and things get better. Take care and hugz to you and your Mom. :hug: Cindy Link to comment Share on other sites More sharing options...
jwatrous Posted November 14, 2006 Share Posted November 14, 2006 First, I would talk with her doctor, as these seizures may not continue - Let him/her decide if she needs that much care again - She just may need someone to just check in once in awhile So, seizures are scary, but before you push the panic button, talk with her doctor Happy Holidays June :cheer: :blush: Link to comment Share on other sites More sharing options...
door60 Posted November 14, 2006 Author Share Posted November 14, 2006 So, they pushed my mother out the hospital door, and now she's in rehab. Today was the 1st time the hospital let her get out of bed, and they wanted her O-U-T She is very shakey though, and not as stable as pre seizure. They increased her anti-seizure meds to double the dosage. Please keep the prayers coming that she'll be at least as good as pre-seizure. Dorrie Link to comment Share on other sites More sharing options...
Guest sheilafutrell Posted November 19, 2006 Share Posted November 19, 2006 Oh Dorrie honey, how I feel you!!!!!! My Mom has stroke Dec 2005 2 wks before her 59th birthday, went to nursing home/rehab til mid April. Came home and was doing really well, great determination and just absolutely precious. She could only receive 20 hours private duty nursing and luckily the speech, physical and occupational therapist popped in and out during the week and the wonderful elderly neighbor came over 3-4 times a day to let her dog out to potty and she was ok the remaining time til her boyfriend came home or I got there, whichever was first. She was doing so good and we are so proud of her. Like your mom, she had seizure Oct. 18th. The sitter left at noon and the speech therapist found her around 1:30 or 2:00 unresponsive. She was in hosp. ICU for 2 days and then sent to the therapy/rehab floor where she was so sick with UTI that she missed a lot of the therapy sessions. To tell you the truth - for a few days there I thought she was not gonna make it. I even spoke with my granny (her mother 84 yo) and asked her to have the preacher visit soon. It has been one long streach of road this past month. Luckily she is some better now, seizures to best i know are controlled with meds, alot of them too, however the effects are bad. The first week after she was better than she is now. She is repeating the last thing that registered with her over and over and it is nerve wrecking a bit but at least she is speaking a bit. Not sure if i just didnt ask the right question or didnt listen but I did not realize this could happen, never crossed my mind that seizures would come up or I might not have let her stay by herself some. Yes i do feel guilty and yes I know I should not as she could have had them with me sitting right beside her. On Thursday last week, she went back to the nursing home/rehab where she was before as there is NO WAY she will stay by herself again. Mainly because we dont want that and secondly she is not able. She is "slower" mentally than before and not walking by herself, not feeding herself as well as before. She is having major spasticity problems which concerns me. We do feel better having her at NH/rehab as they love her there and we feel like they are extended family. I think she is/will be happier there if there is any "happy" in this and she is closer to us and we can visit a lotmore often. This is absolutely devastating to me and I cant imagine how she feels. I somehow tell myself and hope to believe it that i am doing the best i can with what i have to work with and pray that it is the best and right as God sees fit. Sorry so long but i havent been on in a while, somehow i dont seem to have the time. Imagine that. Hang in there. Sheila Link to comment Share on other sites More sharing options...
Schmidt44 Posted November 19, 2006 Share Posted November 19, 2006 Dorrie, I'm sorry you are having to go through this stressful time. Was your Mom taking her seizure meds regularly?? Since she recently was on her own, maybe she got mixed up and didn't take them like she should. I know that it is very important to keep a constant level in the blood to keep the seizures away. Someone mentioned to me that Catholic Charities has a program where people come into your home to care for someone at a nominal fee. I never looked into it because we don't need it at this point..........but I kept it on "file" for future use. Maybe there is something like that in your area........you don't need to be catholic to take advantage of this they told me. I hope you get some answers. These little set backs are not fun. Take care. Tamara Link to comment Share on other sites More sharing options...
door60 Posted November 29, 2006 Author Share Posted November 29, 2006 I just wanted to give everyone an update on my mother..... It looks like she gained everything back from pre-seizure, EXCEPT her confidence and her inner strength. My mother is just so tired of living life like this. What can I do? I don't blame her -- I'm tired too. Today I went to see her at the rehab, and she was just crying, and when I left , I cried too. I really feel her pain. I just want her to be happy. I want her to be strong. What can I do ??? Dorrie Link to comment Share on other sites More sharing options...
kristina38 Posted November 30, 2006 Share Posted November 30, 2006 Dorrie, I know how hard it is to see your Mom hurting or sad, been there done that and it's very hard. Your Mom is still the same strong person on the inside, she maybe down and not feeling as confident as before but she is still that strong woman you know. My Mom suffered horribly after her stroke and spent the first 3 months basically in a coma or close to it and then several more months of acute rehab with horrendous decubitus wounds, pneumonia, mrsa etc. I was fearful she would never have the strength to recover at ALL. She proved everyone wrong and continued to improve and somehow a little over a year post stroke was doing PT that included walking 50 ft with a walker and assisstance! She never regained her speech nor her right arm but we had many fun times together in the last year of her life and she got to know my fiance, had a wonderful Birthday, Thanksgiving, Christmas and I will always be thankful for that. I know she didn't like being in a wheelchair and she got frustrated at times not being able to care for herself but I also know she had many happy times and so will you and your Mom if you can help her to not give up. What you can do, is tell her how much you love and care for her and remind her what a strong woman she STILL is and how much you need her in your life. I can't even tell you how many times Mom and I cried together after she came home and I was her caregiver 24/7. We had happy times and we had sad times and we had angry times but most importantly we had TIME. Kristina PS I lost my Dear Mother a little over a month ago to complications after a gallbladder surgery, she was a pillar of strength to the end and I am ever so grateful to have been blessed with the ability to care for her and have that extra time... Link to comment Share on other sites More sharing options...
kanderson Posted December 1, 2006 Share Posted December 1, 2006 hi dorrie, i just caught up on my reading of your postings. lets hope and prat that the medication takes care of her seizures. i continue to pray for both of you. keep your spirits up regardless how tough it gets. god bless. kimmie Link to comment Share on other sites More sharing options...
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