molly2350

Stroke Caregiver - female
  • Posts

    14
  • Joined

  • Last visited

About molly2350

  • Birthday 07/06/1959

Shared Information

  • Stroke Anniversary (first stroke)
    11-13-2014
  • Interests
    Everything about strokes. Nursing home abuse advocate through A Perfect Cause, my two kitties Frank and Simon.
  • How did you find us?
    Google Search

Registration Information

  • First Name
    molly
  • State
    oklahoma

molly2350's Achievements

New Member

New Member (1/10)

  1. Happy Anniversary molly2350!

  2. Happy Anniversary molly2350!

  3. Thanks Sassy. I looked for a group to join early on. I contacted a grief center. Since Buck is technically alive I was told that I did not fit into a group. Considering my story someone from the community donated the fee for weekly one on one meetings with a counselor. I feel they are learning more from meach than I am from them. I long for talking to others that may be going through similar circumstances. I even put listings on Craigs List under community but got no response. 2 months ago today I had no idea my world would change forever in all aspects. I am now working on adopting Bucks kitties out. These two really bonded with him and don't understand what happened. He would take Simon for car rides each morning when he went for breakfast. Simon also misses his evening stroller rides with daddy. I've tried but he only bolts so that isn't safe. Why is everything so hard? Just want to go back to work and move on. Yes, I am thankful for the support I do have.
  4. Thanks Sue. Seems like our country goes out of its way to separate families. This makes it extremely easy to prey on nursing home victims. My stomach is just churning constantly. I finally called the police down in Florida after I found his estranged brothers address online. He called me after they went out to his house with the news. He thanked me and I gave him the news and number to the hospital. I feel a tiny bit better knowing that his family has been notified. I have got to do something for me one of these days. Seems like all that has filled my life is one loss after another. I do have good support from my family, especially my older cousin that lost her daughter in 2009 from a wrong diagnosis. We talk almost every night. Wish we didn't live so far away. A new friend calls and makes sure I get out. Wish there were some clubs I could join but can't seem to find anything I'm remotely interested in.
  5. Ron, nursing home abuse is rampant in our country. We've been fighting my mom's case for 8 years along with several other families against the same facility. We have complained and filed lawvsuits. The place is worse than ever and continues to thrive. The real key is how many family members do you have to watch over your loved ones care? Even with the best insurance abuse happens over and over. At some point sadly, it looks like I will have to accept our fate. This is when Faith in God comes in. All I can do is Pray that he doesn't suffer too long. If you know of a case where medicaid or medicare stepped in and slapped some hands, I would love to hear it. They don't care and continue to write checks for nursing homes that continually abuse patients. The government simply doesn't care. I have been fighting this cause on a daily basis for over 8 years. God help people that need nursing care. It is run by a politically corrupt system that is getting worse by the day. The politicians won't dare mess with this because it is big money for them. The tragic truth is our government is not for the people anymore nor has been for a long time. We are slaves to it. There wouldn't be such interest in running for offices if there wasn't masses amounts of money to be had. God will sort it all out. Makes me absolutely sick what our society has turned into.
  6. Sorry I haven't updated. Seems like there are no more breaks in life and I've reached a point where I sometimes just want to up and leave but my heart and love for my husband keeps me steadfast in my duties. Buck was released from the hospital after more than a month in icu. Since we could never afford insurance and Oklahoma is the worst state almost for nursing home care, he was placed about 100 miles away in Eufaula at the Wellington Living and Rehabilitation Center. Long story short after being held captive in a place where we wouldn't hold prisoners in, he was rushed back to Tulsa with lights and sirens, to the closest ER they could reach. The admitting nurse said she had never seen such a bad case of neglect. It took 2 hours alone to clean the *beep* that he was covered in off of him. A total of 4 hours to stabilize Buck. It took 2 people to hold me as i screamed and cried when I received this news. My Mom was abused and neglected in a local nursing home where I spent hours by her side and they still almost managed to kill her. I'm Bucks only family and could not make the 4 hour trip but a couple of times in my mechanically challenged car. Holding everything together at home is proving to be more than I can handle. So for the past month almost, he has been healing in a hospital across town that I can barely make it to. Yesterday our "Team" (myself and 3 of his closest long time friends) met with his doctor. Buck had a severe ischemic stroke. He does have very, very, limited movement. He has recognition with limited "Yes" or "No" communication skills. He is a shell of the once vibrant and energetic man he was. We are getting ready to transfer him to a different nursing home this week that I will not be able to drive to. I Pray every night that God has pity on him and takes him home. If I could only afford a better vehicle, I could at least visit him. He will most likely end up in Inola, Oklahoma. This is simply a nightmare that refuses to end. Buck continues to fight. For what I am unsure.
  7. Buck is dying. Scans show his entire brain is going fast. Arteries are shutting down. We will be taking him off all the machines this week and letting him go. It's so hard to watch. Everyone is coming by to say their final goodbyes.
  8. Sue, I have already retained a national firm that took the case after reviewing his admittance records. Attornies jump at the chance to take these cases on a contingency basis if the facts are overwhelming. So always contact an attorny since there is no money required up front. Only if they win your case do they get paid. Even with insurance this nursing home is only one of 2 in the entire area that can accomodate vent patients. I have also found out the hard way that even IF you have the best insurance a patient with only one family member to hold everything together receives inferior care over a patient with multiple family members that can make sure the patient always has someone by their side around the clock. I belong to the group called "A PERFECT CAUSE". We are advocates for nursing home and VA hospital abuse here in Oklahoma. Through our meetings and the many stories I have learned that nursing home abuse occurs just as frequently with insurance as it does without. My Mother had excellent insurance and the nursing home she was in nearly murdered her. We all need to be aware of these facts wherever we live. Imagine being locked in your body, starved, beaten, and God knows what else. When you report abuse or other problems with a nursing home to the State of Oklahoma they in turn call the nursing home to tell them of the exact complaint before showing up to investigate 24 to 48 hours later. The nursing home covers up the problem and by the time the state investigators show up all complaints are written off as invalid.
  9. Buck was doing so well at the hospital 22 days after his brain stem stroke. I was told it was finally time to move him to a nursing home. In Oklahoma I was told by the hospital social worker that there was only 2 nursing homes that would admit a patient with a traek. The best and closest one was two hours away. It was Wellington Hills in Eufaula OK. The director of social services said they were willing to take him even though we did not have insurance. The administrator of the nursing home came to Bucks room and agreed to admit him. A few days before this the nurses had Buck out of bed and actually standing with assistance! Buck and I had worked hard doing PT and OC therapy everyday. He was starting to be able to move one arm and both legs. The nurses were all amazed by our hard work and his amazing progress. I followed the ambulance to the nursing home. I was only able to visit once a week because it was so far away. The director said they would continue to do range of motion exercises. I called everyday and asked them to tell him I loved him and inquire about his progress. I received so much good news! Shortly after the director called me shouting that he was being evicted because we didn't have insurance. I told him that I was told that he knew that by the social director of the hospital. He continued to shout at me and yelled, "HE'S GOING TO DIE ANYWAY!! Long story short, they never cleaned him and left him to rot in his urine and *beep*. Even though they agreed to have him face the door instead of the wall they never moved him in any way. 5 days ago he was rushed by ambulance to the nearest hospital in Tulsa. The admitting nurse told me she had never seen such a bad case of neglect in her life. He had a huge bed sore and several infections. It took 2 hours just to clean the *beep* off of him. They weren't sure he would survive the night. I was so angry i kicked a hole in my wall and it took two neighbors to hold me down and calm me. He is still alive but is hooked up to 11 IV's and other shots during the day. They never told him I had called once. I'm sure he felt I had abandoned him. I called the Eufaula police department who refused to file a report as well as the Oklahoma State Police, and Sheriffs office. I finally called a national law firm that after a short investigation has taken the case. 8 years ago my Mom was abused, neglected, and possibly raped by a Tulsa nursing home and barely survived. Two years ago that nursing home agreed to a settlement agreement and we have yet to see a dime. I stayed withher everyday for 8 to 10 hours a day and all of the abuse still happened. Buck is alive but back in the ICU. Wellington Hills in Eufaula evidently never suctioned his lungs and left him to rot except for the days we visited. He is completely tramatized but finally calming down with me by his side everyday. He is back at square one or worse. God Bless my sweet husband. Today he started trying to move again. We cannot do any therapy due to the massive pain he is in and his injuries. We have to keep him on pain meds and 4 of the strongest antibiotics on the market. Today was the first day that the fluid levels from suctioning his airway has finally diminished. Between fighting to keep him stable in critical condition and working on both law suits I am a mess. What the f*ck is wrong with Oklahoma? I am also busy contacting the media and every official I know. Oklahoma is 49th in the country for the worst care in nursing homes and our VA homes. Please pray for him and spread the word about the horrific treatment of nursing home "care" in Oklahoma. I will not stop until this *beep* director is prosecuted to the full extent of the law.
  10. molly2350

    12-1-14

    All of you help me rise above any negative talk. I also started weekly counseling that an anonymous donor is paying for. An incredibly humbling experience.in addition I have been seeing a very good psychiatrist for the past 6 years that specializes in anxiety and panic disorders. Watching my diet better also. I also belong to the Oklahoma group, "A Perfect Cause", thats main focus is nursing home abuse. We have a meeting tomorrow night as and will be researching options for Buck. I think if anyone had the chance to see what I have seen over the past 18 days they would try to at least change something in their lives to prevent a stroke. Shock value to the general public needs to be included in a national campaign for stroke awareness. I can't believe how many men especially do not have their blood pressure monitored. I keep hearing, "It's a man thing". That needs to change. Thanks everyone for your great advice. Was going to blog tonite but my charger disappeared to my tablet. Will post asap.
  11. molly2350

    12-1-14

    The last two days have been 1 step back and 1 step forward. Buck looked better today but pretty frustrated.. The cathetor was removed due to an infection. Changed towels once an hour or two to keep him clean. Bowel moves are so demeaning to him. He was emotionally down today. I managed 30 reps on each of his arms and hands. He also developed bronchitis and they are checking what strain it is. Got his flu shot when he was admitted and his pneumonia shot today. Weaning him off blood pressure meds. No fever and all vitals are good. First day that he was breathing completely on his own. He starts yawning late in the afternoon and they do assist him at night with the vent. It is imperative that I work with his arms and hands. I do not want him laying paralyzed in a nusing home that is an hour away. I will only be able to visit every other day at the most. The case worker told me not to move yet because most likely they will move him again in another month. This is what happens when you don't have insurance but I am fighting that we can possibly get him placed at Colonial Manor where my Mom spent 6 years. Family owned since 1962 by the same family they treated my Mom very good. They keep everyone clean and busy with many activities. Food is decent. We ate lunch and dinner several times. We'll see. Anyway, so until tomorrow.
  12. On this day of last year my Mom passed away in our home from complications of alzheimers. God I despise that disease. The last thing she said as she sat up in bed and looked straight at Buck was, "You won't live to see 60". Laid back down and then she was gone. Well I take that as a personal challenge Mom! Though she loved my husband like her own Son I will fight to make him better and keep him around past 60. He's 57 now. Why in the world would someone say that on their deathbed? Didn't think I would survive yesterday. Just a really bad day. Went to the hospital this morning and Buck was looking a lot more like himself. Pretty much weaned off oxegen except at night. The doctor came in and announced he was moving him to the "Step down unit" which is in between ICU and regular care. YAY! Part of my depression stems from being in the neuro ICU for so long. 16 long days. Can't wait to see that bill bulging out of my mailbox. I've seen so many people with head tramas. Gunshots, car accidents, strokes and God knows what else. Seeing the empty rooms the next day and wondering, "Did they make it?". Buck is off the oxegen except for at night. He still continues to have the vent attached and receives constant breathing treatment to avoid pneumonia. Love the new room. Cushy over sized chair that folds out into a bed. Two other regular cushioned chairs also. I feel that I'm being rewarded for the 16 days we survived in ICU with those hard metal folding chairs. They changed the pic line from his swollen right hand arm to his left. Worked his arms, hands, fingers, and legs. Got a little movement out of his regressing right foot. A finger barely moved once. Life is good. Placed an ad yesterday for a roommate and got a response from a 40 year old woman that is a full time student. In the ad I stated that I really needed help around the house. Sounds good. Hopefully this will work out. She doesn't even mind helping with the cat box. Awesome. The kitties say, "Cuz Mom just isn't pulling her weight in that area". Hey! They always have fresh food and clean water though! Took my siamese "Simon" for a car ride tonite when I ran to the store. All the trouble with the car heater and then it felt like spring today. Go figure. Anyway that was one happy kitty. So Buck was a little frustrated today. After I signed the form for the two techs to change his pick line and finished the procedure, he would barely look at me. They were two woman about my age. First people that actually had real interest in looking up this site when I mentioned it. "Yes" and "No" signs with his foot are a God send. Asked him if he was in pain, "Yes" came the answer. Asked him if he had a headache and I swear his expression was "Duh". Asked him if he wanted pain medicine. "No". Same old Buck. Let the doctor of the day know. Asked him if he wanted to watch t.v. and he responded "Yes". That's when he pretty much tuned me out. He really isn't happy about the roommate situation either. Gotta do what I gotta do. Down to my last $20.00 and really need some help. Put up a sign on his headboard that reads "Buck", "Talk TO him, not about him, he understands what you are saying". That really changed the way he is being treated. Nice people on the eighth floor. A decent nights sleep and a new perspective. Yes today was definately a two step forward day.
  13. Happy Thanksgiving to both of you also. I really thought that after we lost my Mom last year, all of this care giver business would be over. I really enjoyed so many of the residents of the nursing home she spent her last years at. I am just so very thankful that we got to bring her home so she could pass away around the two people that loved her the most. She and Buck were so close that I was often mistaken for the Daughter in law. With his 6 foot statuesque frame he would whizz her around parking lots and she would laugh and squeal like a little girl. In 2009 she competed in the Miss Senior Oklahoma Pageant representing her skilled care facilty she was in. Buck took her on stage and as the music played he wheeled her too and fro as if she were dancing with him. Anyhoo. Thank you for your comments and know I am thankful for a chance to be a part of this special group of peopleā™„
  14. Just got back from the hospital. After 2 days of tests and minor surgeries Buck has finally had 2 solid days of deep sleep. When I showed up at his room they were getting ready to bath him. They always ask that I come back in 10 or 15 minutes. I find this almost humerous since after 15 years there is nothing he has that I haven't seen. Even if there was the horrors of this stroke and the medical procedures that have been done, watching a sponge bath would be nothing. Anyhoo. When I came back I was speaking with his nurse of the day. You never know what type of personality you are going to deal with but quickly fall into a routine, twice a day dealing with different nurses. Kim asked me what I knew about his condition so I quickly brought her up to speed and also spoke about this site and all of the first hand conversations I have had with people that have been knocked down to Bucks level from this monster of a disease. I ask her if he's awake and she reports that he still has not come to. This worries me some. I enter the room and his eyes are closed but I'm talking to him anyway. I put my coat and bag on the sofa, look over at the bed and his eyes are open. It's as if he has been waiting to open them for me and I smile. I go over and give him a kiss and tell him how much I love and miss him. I feel special. The doctor came in, I think his name was Larson. Molly, get a pen and paper hello! His ct scan shows that the two stems at the back of the neck still show blockage on one side but the other side is clear. I spend a couple of hours catching him up on my research of his condition. I also explain that I will always hold more creedence in what actual survivors have endured over the medical community's prediction. After all I have learned from this sites survivors such as Steve, that every stroke is as different as each of our fingerprints. I read all of the new responses and then I realize, crap! I forgot to charge my tablet. So I turn it off and continue to talk to him regarding "what I know about what I don't know". I think many of you can relate to that little phrase. I tell him that I know he is still there and will continue to talk to him about everything I find. Communication is key and we MUST find a way to communicate. The only tools we have to work with is his foot, eyes and vital stats monitor. Quickly I notice he can now move his foot not just side to side but up and down as if tapping his foot. YEAH!! The eye blinking 1 for yes, 2 for no has not been working very well for us. He seems to catch on quickly that waving his foot from sided to side is "No" and moving it up and down as you would nod your head is "YES". YES, he did want a wash cloth on his forhead. O.K. we're rocking now. The respirator tech comes by to suction out his throat. The nurses do this during the day but this guy is known for his deep cleanings. I can't believe I'm getting used to watching a complete stranger jab a mini vac down my husbands throat, all the while he starts coughing turning a deep shade of crimson and adding 15 points to his heart rate but I am. When I asked the nurse to come in and do it he started moving his foot back and forth saying NO. I point this out to her and he quickly changes his answer to YES, get this crap out of me. That does sound more like the man I know and love. John D. came by. This guy is a character from a book that has yet to be written. I must share his story but that will be for later. I look at the guest book I sat on the table and see a pastor has com by. Buck moves his foot to say YES when i ask him if he remembers. John had asked me if Paul had come by but we couldn't understand if Buck was saying yes or no. So I ask him later if he had indeed dropped by and I receive the NO response pretty clearly. I notice when a visitor comes by he gets a little flustered right now. He has also decided not to "perform" like a trained seal for almost all of the nurses, doctors, and techs but that's o.k. and in line with his personality. I know that it makes me look like I'm living in a fantasy world but I don't care. If this is all the control he has, so be it. At one point I'm rubbing his foot and his leg literally recoils with the knee up off the bed. Great! Now we have not just foot movement but I do no that he can physically move his leg. Awesome. I ask him if it hurts his skin when I touch his foot. YES is the response. O.K. I say, won't do that anymore. It's almost 2 p.m. and I tell him that I should get something to eat in the cafeteria. Would that be O.K.? He responds YES. I eat and am back at his side. I haven't been sleeping well. Insomnia has been my arch enemy ever since I contracted meningitis some 35 years ago and know with the stroke I find it completely impossible to turn my brain off. It's 4 o'clock and I ask him if he minds if I leave a little early bcause I'm so tired. O.K. This tore me up. I look at his foot and he is shaking his foot saying, "NO NO. NO!!!. I wanted to cry. To be honest I had been feeling quite faint all day and was worring about my blood pressure and heart. I've had two mild heart attacks in the past and with the literal half mile track to the car from his room knew I was pushing my luck as it was. I talk to him a little more, give him a kiss and leave. I let the nurse know and she agrees I should watch my health. A couple of times today his bpm rose into the 90's. This is usually proceeded by a cough. He does panic a bit so I lower my voice ever so gently while rubbing his chest and say "calm, calm, calm, everything is O.K. Buck. Let's slow your heart rate a bit". Immediately his bpm starts lowering. I learned this from calming my asthmatic kitty Simon when he's hacking up a furball and starting to go into panic mode. Don't tell Buck because I don't think he remembers or it is such a minor detail of pre-stroke that is has been over written. On the way down I update the wonderful elderly receptionist and chat for a couple of minutes. It' good to have her desk to lean on before the next half of my journey to the car. Carla calls to wish us as happy a Thanksgiving day as possible and before I know it I'm home on my bed.