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Broken247
Stroke Caregiver - female-
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About Broken247
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- Birthday 01/20/1975
Shared Information
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Stroke Anniversary (first stroke)
01-12-2014
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Stroke Anniversary (second stroke)
01-23-2014
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Stroke Anniversary (third stroke)
12-02-2014
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How did you find us?
Google Search
Registration Information
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First Name
Shannon
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State
LA
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New Member (1/10)
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Just not sure I am ready for change
Broken247 commented on Broken247's blog entry in Broken247's Blog
David, thank you, you are so kind for taking the time to respond and advise... We have actually met with 2 different social workers and have found that we fall within the gap. No one really covers the 19-64 age range in this area unless they are mentally challenged. There are frustrations one after another and I am hopeful that things will turn around and he will gain some independence. Yvonne, he is in a new facility with a different social worker and during the discharge planning we will discuss options. I am hopeful that this social worker will be well versed in what we can do and what is available. Sandy, he is on social security disability and has COBRA insurance from his old employer. The insurance company is very strict on what they are willing to pay for and what they wont. Betsy, just WOW!!! Thank you so much. Your words spoke to me on so many levels. Lots of really good advice. You have such a way with your words and thoughts! It's truly the little things that have grabbed my focus now. It's the here and now rather than the "what if's" I agree about the kids come first. Those two little men are just 5 and 3 and they have a full life and a whole lot of adventures to be had. My primary job is them even though I will need to juggle multiple rolls, I need to make them a priority. This past Saturday Kevin was moved to TIRR in Houston. I was so excited because this neuro rehab is ranked third in the US. It's a huge accomplishment to get him in there and I am praying that there can be marked improvement. He will be in for a minimum of two weeks and though this makes it really hard on me and the kids since he is 2.5 hours away, we are making it work. They are looking at a new wheelchair, multiple other devices to help him become independent as well as they just placed a cast on him yesterday to work on straightening his left arm. There is still that underlying fear though. On Sunday when I left he was fine but on Tuesday there was an issue early in the morning. His core temperature dropped all the way down to 92 degrees. They do not know why this occurred other than it is some sort of infection. I'm so scared that I am not going to see the signs or not push him enough to help prevent a sickness. He is internally fragile and often times I forget that. I have blinders on where I know he's working on trying to walk, he talks, .etc but internally there is still this weakness where he can deteriorate rather quickly. It still scares me that he will be coming home and we may get a nurse or a CNA 1x a week to check on him since insurance will not provide more than that. It's very sad that the way our system is set up, it does not matter that there are other circumstances in our home that are not factored in on his well being. I am still optimistic though that the social worker there at TIRR will be able to provide some suggestions. It is such a marvelous facility and they are doing so much with him. I'm so happy that he is there. Again, thank you everyone for taking the time to read my rantings and providing insight and suggestions. Hugs, Shannon -
Just not sure I am ready for change
Broken247 commented on Broken247's blog entry in Broken247's Blog
David - Help is a lovely 4 letter word that seems to escape everyone's mind around me. I have to pay to have someone come in to help which is hard when there isn't a whole lot of money left to do so. I'm just changing my mindset and going to do it myself. I don't need to be disappointed by anyone else anymore. I ask for help and I am forgotten or their lives are too busy to accommodate me and I have to wait for when they are good and ready. I get they are busy and I try to understand that but when someone lets you down repeatedly you learn your lesson sooner rather than later. Sandy - You are so right. You just never know when a tragedy will strike, you have to just roll with it. The insurance company is pushing for him to get out next week, They are really fighting me with providing any further services for him. I keep hearing, "If he meets criteria." rather than, "lets get him help so he can be a functional human being again." Yvonne - My husband's adult daughters live near us. One of which is only a .25 mile away. The other is farther but she doesn't drive so we do not see her much. For the one that lives close to us, I haven't seen her since 1/19. Originally we moved in with her and her family so they could help us out but it was too much for her to handle so I had to move us out on our own. I asked that she come sit with her dad every other weekend so I could go to the grocery store and that happened once and then she never came back around. I think this must have been my mistake for not setting up a schedule for her but I also didn't want to become overly intrusive on her life and her family. I do travel for work so when I am out of town the closest daughter keeps our boys and the other daughter comes and stays with her dad. That is truly a blessing and I do appreciate that so much but that is only so often so other than that there's really no relief. I have no family or friends here which makes this very difficult for me. Cindy - Oh thank you!!! You are such a doll but there is a BUT to all of this. I have been trying to get him placed into a skilled facility but our insurance will not pay for it. Actually he's in one now and they are trying feverishly to kick him out of it. We qualify for no assistance what's so ever. He does receive his social security disability but he is only 45 so we have to wait the 25 months to apply for Medicare and that totally looks like a nightmare. Parts A.B.C.D sheesh!!! Even looking at Medicare for a skilled facility it shows only 100 days and you have to pay $100+ from days 21-100 - we don't have that kind of money along with all the premiums associated with Medicare (mind you I'm still learning about Medicare) and all the working parts. We tried Medicaid traditional as well as long term Medicaid to place him in a facility and both denied us due to we make too much money. I can't quit my job because bills have to be paid, medicine has to be bought, insurance needs to be paid for, housing, transportation, medical supplies, you know how this list goes on and on. I am literally forced to be a caregiver because there are no other options left to us. I'm not resentful and I know it must sound like I am but I'm discouraged. I want to do right by Kevin and my boys as well as try to keep myself healthy. The system is so broken and I am just not sure what's left, what rock have I not turned over? I'm so sorry your husband had a stroke Cindy, not the best timing at all. I'll borrow some of your strength if you don't mind? Thank you everyone for your comments. I'm sorry it has taken me so long to respond. Over the weekend I had a bit of a health scare and I needed to get things under control. I went to the doctors on Monday and they are working with me to resolve pre-hypertension as well as a bunch of lab work tomorrow. They have also placed me on prednisone and an albuterol inhaler due to I was having difficulty breathing. Lucky me, I now get to carry around two very pretty epipens as well. I need to go in for a lung function test to see for sure if this is asthma, or potentially stressed induced asthma. Doctor said that my body was telling me it had enough. It's time to focus on keeping myself health and taking care of me. I'm working on it, truly I am... Shannon -
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...
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Sandy, you are awesome! What a great caregiver and source of knowledge and information for me. Thank you so very much and when he comes home I will make sure I do these things. I do stop Kevin while eating to drink but was always curious about the vomiting. The rehab that he was just at was under the impression that he my have polyps. He went into the hospital so we missed that appointment and will need to reschedule once he is back home again. Thank you again for sharing, you are very insightful. Shannon
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Donna, Thank you so much, I will certainly look into the elder law attorney. I never had an idea that such a thing existed so this will help tremendously. Becky, I have made the decision to not tell the boys anything. I can't even begin to prepare them and I have been advised by my son's doctor that when the time does come that I need to be honest with them, speak plainly so they do not misconstrue what I am saying to them. As for the PEG. He already has one in place and is currently on thin liquids and a mechanical soft diet. He adamantly refuses to have nutrients provided via his PEG. Even after speaking to speech that I wanted them to thicken his liquids they wont and still cleared him for thin. I would like to have him 1:1 during meals but again, not enough staff so this can not be accomplished. The other key issue is if he becomes ill and vomits. There is nothing we can do to prevent aspiration during this process which does not make me feel comfortable at all. Debbie, While eating he is aspirating for numerous reasons: he wont tuck, he wont slow down, he gulps, he drinks from a straw knowing that he has issues with the splash and the topper is that he refuses to sit up properly while eating or remain sitting up afterwards. He is still so creative but the logical side to do what needs to be done to take care of himself or at least the thought process to follow the rules to do so is gone. Sandy, Thank you, those are all great options and I will be sure to use those when he comes back home again. Thank you all for your comments, your insight is very helpful to me on this journey.
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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.
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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.
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Thank you for posting this. Your story is beautiful and has made my heart feel a happiness that has been missing for awhile now. Your joy and love for one another reminds me that even though we struggle in life there are all the memories of the past and yet the memories to continue to make in the future.