Broken247

Stroke Caregiver - female
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  1. Broken247
    Kevin has been away from home since December 1st. After him having aspiration pneumonia, sepsis, another stroke and aspiration pneumonia again, I'm just not sure I can do this again.
     
    I am a caregiver I am not the "survivor" or "victim" but that's nonsense. I truly understand that his life as he knew it changed and he has lost a lot, but so have I. So have our two young boys. Everyone asks how is he doing but they forget that this did not just happen to him, it happened to all of us. We lost income, a large part of our livelihood, our home, or freedom and all the things that we expected to do in the coming years. I'm angry about this and that is not going away any time soon.
     
    I miss my partner. I miss having someone to talk to, someone to hold my hand. I miss having someone who at least pretended to care about how my day went. Now with the strokes he is more self involved and when I actually talk he interrupts and starts talking about himself. I can't have a conversation with him. I miss that. I miss the love we had for each other. I love him dearly but I am not "in love" with him at this time. He's not the man I married, he's not the man I was supposed to spend the rest of my life with. He is the man that I love and cherish and will fight for.
     
    Our future is unknown but this is the same for everyone. With having plasma in his cerebral membrane a stroke can occur at any time. It scares me. I'm praying he will remain in a facility longer. I know that I am unable to handle all the stress a caregiver brings. I know I am too weak to keep it all up like I did for six months. I'm already broken, I have no relief. Everyone says go have some "me" time. How is that possible? I mean really, I have two little boys one of which is in school and is an Aspie which means I live in constant fear of him harming his younger brother. I can not leave them alone for one second. With bringing Kevin home that means there is another person who truly needs 80% of my time and I just do not have it. There's not enough time in one day for me to do everything let alone the patience and endurance. I'm unable to quit work and we do not qualify for any assistance other than social security.
     
    It's so hard to be lonely and feel like I do not matter, I do not count. No one will help me, they never offer. Some days I feel like such a bad mom and wife that I just want to walk away and not come back. Am I doing more harm than good? Am I going to be able to tolerate someone berating me and being downright mean to me? Am I going to have health issues trying to keep up with the needs and demands on me.
     
    I am just scared of going back to feeling like a complete failure 24/7. I'm scared of all the pressure and frustration that being a caregiver will once again bring.
     
    I just don't know...
  2. Broken247
    This is a nightmare that just seems to continue. I cannot imagine how one person can endure so much and still be here on Earth.
     
    Kevin had to be rushed to the hospital on 12/1 due to breathing difficulties. This of course came back to aspiration pneumonia, again! I was away on business when my daughters had to make the call and try to make sure their dad was taken care of. It took me over 12 hours to get home and those were some of the worst hours I have ever spent.
     
    When I walked into his room it was deja vu all over again to what had happened almost a year earlier. He was asleep and not waking up, I knew what had happened. They had given him a Narco for pain at 5:30am and he finally fell asleep at 7:00am with me arriving at 8:30am. I tried to wake him up, he wouldn't. I tried again and again, still the say result. When he finally did come around he couldn't speak. I knew it was a stroke! The doctor said that he had sepsis as well as pneumonia and that it probably wasn't another stroke since the CT from the afternoon before was clear. No, that wasn't it and I knew it, I know my husband, he wasn't right and it had to be a stroke. Two days later my fear was confirmed.
     
    He actually seemed better after this stroke, it was like things had been awakened and maybe, just maybe we could make forward progress. Then the neurologist came in and provided what was yet another gut wrenching blow. His carotid arteries were clear of all plaque, great news. Until I asked what could we do to prevent future strokes. His response did not give us any comfort. He believes he has plaque in his cerebral membrane and there was nothing they could do, "It is what it is" as he said.
     
    We managed to move him from the hospital to a rehab facility over an hour away. He seemed to be making progress but vomiting had started. On 12/28 he was vomiting and had no idea why. I hadn't heard from him that night so I was a bit concerned because once again I was out of town. I flew back home 12/29 as planned and after leaving the airport I received a call telling me that he had been transported to the local ER with respiratory distress and what they thought was aspiration pneumonia AGAIN!
     
    Here I was two hours away and he was all alone. I had my daughter call and say she was me to get an update and she learned that he had declined and was now in ICU. Great another long drive with no idea what I was walking into. His O2 stats were low and the pneumonia was bad. I was advised that they had been suctioning him for quite awhile and pulled out a bunch of junk from his lungs. He's a DNR so once again I was facing loosing him.
     
    He has now expressed that he is tired and that he wants to try one more time to get better but if he aspirated again he was done. I do not know how one person can handle pneumonia twice in a single month especially with all the other issues he has.
     
    He is in a skilled facility now to try to get some sort of rehab. I am praying that this will work but the longer he is in there (went in last Thursday night) the more I feel like he may not come home. He is so swollen on the left side of his body but no one seems concerned about it. His short term memory is even worse after the last stroke. Any benefit that the recent stroke may have provided is non-existent now.
     
    I do not know how to prepare my 3 and 5 year old that their daddy may not be back... If he does come home I am so ill equipped to care for him and our insurance offers no support whatsoever, I just don't know what to day, how to plan, how to prepare, how to be alone.
  3. Broken247
    It is hard to believe that 15 years ago today I met my soul mate. He is the man who has changed my life and the way I was living my life. He has taught me to give of myself, put others first and always do more for someone else than yourself. I am not sure how I became so lucky to have this man come into my life.
     
    We were only together for not even two months when he proposed and I happy accepted. The plan was to get married quickly but I had to figure myself out. He teases that I made him wait two years before I would finally commit. Commitment was such an issue but also the simple fact that he had children and so did I. It was very hard for me to get over what my first marriage ended in. I truly believe until death do you part but he did not. So it was hard for me to mourn the loss of that marriage that I somehow failed but then there was the issue of having someone else raise my child and vice versa.
     
    I was so lucky to see the example he set for me. Though we lived two states away from his daughters, we always drove down once a month to spend the weekend with them. We would even do Christmas in a hotel room since we could not bring them back home with us. This man never missed an important moment. We drove to surprise both daughters for their 16th birthdays. When graduation time came around he was there. When children were born we were there shortly after. He set a fine example.
     
    As my son entered high school he became involved with the school. My son played football even though he never had and rather than yelling at the coach for not playing our son he went to ask him what HE could do to make him better so he could play. Needless to say he shocked the coach. He then started the athletic booster club at the high school to help our athletes with equipment as well as mentoring and scholarships.
     
    As proud of him as I am for all that he did to put a smile on others faces, I was sad. We had two little boys of our own now who should have been spending time with daddy instead of him always being at the school. Family was placed on the back burner because he was so focused on the high school kids and the experience they were having. It was hard to handle just about everything myself. He should have been there. This was the time where as a family the mother and father were both present. Those were the days and memories to cherish for a life time.
     
    October of 2012 he wasn't doing so well. There were some health concerns and many of which he truly ignored. It was upsetting to watch someone you love so deeply ignore all the warning signs that were given to them. It's also hard to watch someone you love so much deteriorate right in front of your eyes.
     
    Then came what I thought was a TIA. Everything in my gut told me he had one. He denied it and refused to let me call for help. I should have done more then. I may have been able to prevent what was going to happen in less than a year from that time. As they say, "You can lead a horse to water but you can not make them drink." This was such the case as well and I think I have finally managed to work through the guilt of not doing more knowing that I should have.
     
    The next few months his health was declining more and more. He was going to work and coming home to sit on the couch. It left everything for me to do. Frustration set in and I'll admit a bit of resentment. This all still did not prepare me for the trial we were about to face.
     
    He became sick while out of town and wouldn't come home. I finally threatened to go get him and bring him back and he agreed which scared me the most. He tried to drive home but physically he was unable to do so. His employee picked him up and brought him home. The man standing at my door was not my husband. He was gray, haggard, and he couldn't breathe.
     
    I had taken him to the ER once before because he was almost in a diabetic coma. This ER trip had me scared. I didn't know what would happen, I just knew there was something terribly wrong. He spent over 3 weeks in ICU. He had a heart attack a few days before and didn't know it, H1N1, Flu A, he went into renal failure, congestive heart failure and respiratory failure. I had to have him placed in a medically induced coma to try to save his life. He was in isolation due to the H1N1 and he was also in reverse isolation where we were contagious to him. He had sepsis and the respiratory tech was not sure if his lungs were going to be able to continue holding the amount of volume they were pushing. While all of this is going on he managed to have multiple strokes. Two on the left side and majors on the right. He was not waking up from sedation which caused the alarm bells to go off with the medical staff and specialist. Spinal tap, blood transfusions, plasma transfusions, IV antibiotics, etc. He had a CT and then an MRI and it was determined that the strokes were caused by vasculitis which is rare. We had three options at this point: steroids, blood filtration or IVIG therapy. The first two were out of the questions because they did not think his body could handle the treatments. So, IVIG it was which was administered without knowing if it would truly work.
     
    They finally got him well enough to place two stents in his left valves of his heart and send him on his way to an LTAC. I have never in my life heard so many Code Blue calls. It scared me. What happens if I lost him? He already survived the 50/50 chance from the heart attack and he already survived the 50/50 chance from the H1N1, how much more can he take? He stayed for 6 weeks there and the stories I could tell but now is not the time for it. Lets just say that at this point everyone though I was a nurse.
     
    From the LTAC it was to Rehab and unfortunately he did not excel here at all. He was there for 4 weeks and made slight progress but not enough. I knew I couldn't take him home. Our home was not safe for him to be there and there was no way that I could do everything he needed. At this point he hadn't seen our boys since January 3rd and it was now April. I couldn't bring our boys in to see him like he was, it would have caused so much trauma to them. But not only that, our boys were with their older sister in another state so I didn't get to see them either.
     
    So to skilled we go. This is the time where I had to start sleeping at home. Hadn't done it for months but now I had to. He hated it there and I hated it for him but he was receiving the care I could not provide. He was there for 6 weeks before i brought him home. It took some adjusting but the boys are coming around more. But this all brings me back full circle.
     
    This man who did so much to be in his daughters lives even though he lived miles away. He did so much for other children that he missed the most important time with his two boys. Now I'm not saying what he was doing was wrong because it wasn't. What I am saying is that life is so short. We tend to take things for granted, especially those that are closest to us. We don't think about the what ifs of the future because we think the future is always there. But it is not...
     
    Now was supposed to be the time that we as mom and dad get to raise our boys together, under one roof. Now was the time that we would be able to show them all the wonders of this world. Take trips, go to parks, have fun. But life took a turn. Life changed not only for the stroke survivor but for all of us.
     
    My husband has done so much good in his life. He has touched so many. The love and support that I have received from his friends and co-workers is just overwhelming. It is beautiful to be reminded the good that he has done because if he hadn't then these truly wonderful people would not have helped me through some of my darkest hours.
     
    Would I change things yes, but only to give two sons more time with the father that they deserve to have. Not the father the strokes have left them with or the mom who is now too tired, stressed out and short tempered because there is just too much for any one person to do. I mourn for my sons. They will not have the same dad our older children experienced. They will not have the same experiences our older children experienced. The are missing so much and I truly resent the strokes for that.