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I would like to share this with you.....

Discussion in 'GENERAL DISCUSSION' started by jumboscampi, Feb 16, 2018.

  1. jumboscampi

    jumboscampi WELL KNOWN MEMBER

    Hi everybody.

    You haven't seen a whole lot of me in here...or anywhere else for that matter...my mom (you may know her as margo45205) had been on hospice care here at home since October, passed away last Weds, Feb 7th, 4 days before her 74th birthday. Her and I had lived together for about 20 years and have been sharing the same bedroom for about the last 14 years. I , of course, became her caregiver throughout her remaining last few months. She was not only suffering from end stage congestive heart failure with all of it's complications, but also, because her brain had been receiving lesser and lesser amounts of oxygen as her diseases progressed, she developed symptoms exactly like dementia, I wasn't expecting this to happen and over the course of her last week with us, I saw her slowly, day by day, minute by minute, going from having a nice conversation at the kitchen table with us to not so much as to even recognize who each of us were. I felt like I didn't really even get a chance to say goodbye to her. I had been so busy turning her every 2 hours, giving her all of the usual medications adding in more and more of the morphine and Ativan as the need to increase the dosages became warranted, trying to deep her clean and comfy, giving her the nebulizer treatments every 4 hours, changing her bandaging on her feet, tending to her catheter, getting her something to eat and drink when she was still able to do that, and focus on what needed to be taken care of when her nurse was here on her what were bi-weekly visits that became daily visits toward the end, that I didn't realize until it was too late that I hadn't spent near as much quality time with her as I would have done otherwise. Also, even though my sister, 2 brothers and my sister in law live here a well, of which only one of them works a full time job, I did all of this all by myself! So, precious time went into doing the things that needed to be done and had to be done instead of what would have been a better balance of more quality time being included into that as well. But, honestly, at least I knew that there was nothing more that could have been done for her in order to make her final days the most comfortable for her as was humanly possible. And, after all that that woman has ever done for me, as well as seemingly EVERYONE that she has EVER encountered, it was my honor and privilege to have spent such a personal, loving and intimate moment in time with her that few daughters ever get the opportunity to spend with their mother as I did with her in the last week of our lives together.

    Through the years, she had 3 or 4 heart attacks; COPD; cervical cancer; but, even more miserable to her than any other health issue she may have had were the complications that manifested in her body from being born with a hereditary disorder called Ehlers-Danlos Syndrome, which, by the way, I have as well, along with my sister and many, many other family members in the 5 + generations prior to our own who also had the misfortune of inheriting the gene that caused it to occur, most of whom died from the complications it would cause, usually aortic aneurysms, heart murmurs, mitral valve prolapse, blood vessels of all kinds breaking just from clapping your hands or running down the street, easy bruising is putting it mildly, skin breaks and rips so easily it would make your head spin, etc., before old age sets in....we figured that the average age was around 56 or so, my uncle was one of 4 that we know of who died of an aortic rupture and that was at the age of 38. My mom was the "record holder" for becoming the one who lived with it the longest by passing away at the age of 73, although being just 4 days shy of her 74th birthday qualifies her, at least in my book, to be 74 years old! Thank God that the only ones alive in our family who have this disorder are myself and my sister, Martha. Martha's son Steven had been born with it but he passed away a few years ago, at the age of 27, from a car accident. It had been getting passed on to 100% of the women in the family until my mothers brother inherited the gene becoming the first male to have it in our family. My 3 kids were the first set of children born in which none of them inherited the gene and with my sisters son Steven no longer living after having inherited it, this ends the chance of it ever rearing it's ugly head in the family ever again!!

    Moral of the story is: you will sometimes inherit family traits that you have no control over and want no part of, and sometimes you wish that you had control over the traits of some family members that you always want to be a part of your life, but, who never seem to be there when you need them the most and then sometimes you become part of a family members life, and they become part of you in ways that become just exactly what you were looking to inherit all along and didn't even realize it, and when you finally do, it's often times too late to say thank you.

    Don't wait until it's too late.......
    In loving memory of my mother Margaret L. Alexander King
    February 11, 1944 to February 7, 2018
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  2. PSP

    PSP Ruler of Western Civilization's Geeky Nerds

    I am sorry for your mother's passing, but am bolstered by your positive outlook. I officially ran out of parents about 10 years ago and I am suffering from some of the genetic traits that we can't change. Keep monitoring the things that you can't change and keep the faith!
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  3. PMM

    PMM No Deposit Forum Moderator Staff Member

    Thank you Leslie for sharing with us.

    I'm so sorry of your Mother's passing but rest assured she is at peace now.

    A positive outlook and faith is everything, just as PSP stated.

    I'll keep you in my prayers, and send good thoughts your way for strength and courage.

    Take care.
  4. Mben

    Mben No Deposit Forum Administrator Staff Member

    You have my condolences, Leslie.

    May your mother rest in peace.
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  5. jumboscampi

    jumboscampi WELL KNOWN MEMBER

    Thank you guys. I feel kind of bad for venting like I did, there are so many emotions and feelings going on inside of me right now.

    I appreciate the shoulder to cry on.
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  6. orren


    I am so sorry for your loss and don't you be feeling bad for venting.

    I'm fairly sure you didn't ruin anyone's day. At worst maybe reminded them of someone they lost and that's plenty ok.

    I'm thinking you may have also enlightened some of us. As to what this disorder called Ehlers-Danlos Syndrome is and does. There's nothing wrong with gaining further knowledge either.

    I wish you the best. It may not get any easier, but at least you know it won't get any harder from now on.
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  7. jumboscampi

    jumboscampi WELL KNOWN MEMBER

    Thank you orren! I feel much better today and you helped with you comments to make me feel even "more better"
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  8. Mben

    Mben No Deposit Forum Administrator Staff Member

    Thanks for mentioning "maybe reminded them of someone they lost", @orren.

    @jumboscampi , because this is about you and your mom, not me and my losses, I didn't mention this, but will now.

    I lost my father three years ago. He had dementia. It was absolute horrible. When it first started setting in, I was taking care of him at my brother's home as my brother was relocating to Boston with his family. Eventually he would come for my dad once they found a new home and got his part of the house set up for him. My sister in law was my father's caretaker.

    Anyway, one day after running him to doctor appointments, my dad and I were sitting around at home and he tells me "Thank you, Michele. I'll never forget you." I laughed and said "Of course you won't. I'm your daughter." The day did come when he didn't know who I was.

    As they did the day I read your post, the tears are flowing down my face again right now.

    So I just want to say that I know how you feel. And I know that many others know how we feel. No matter how we lost parents, or anyone for that matter.

    Hang in their, sweetie. Like orren said, at least you know it won't get harder. Hugs to you.
    PMM likes this.
  9. slotgal47

    slotgal47 WELL KNOWN MEMBER

    So sorry to hear about your mom. I too have heart failure, just found out about 6 months ago and am due for another surgery. For right now I just have HFpEF which is heart failure with preserved ejection fraction. If not corrected it will probably turn into congestive heart failure. I was told I had rheumatic fever as a child and this is what messed up my mitral valve which has now turned into heart enlargement after years of that being fixed and if enlargement not corrected my tricuspid valve will need replacing because the enlargement is pulling on it causing it to leak more than it was already. But I think that I may have inherited this disease from my dad. I say this because I just found out the dad I lived with for 53 years was not my dad but my step dad. But there is no way of knowing if it was inherited because of course now I can't find him, just some distant relatives from DNA test I did online. I find the dementia concerning because I did not know this was one of the symptoms of congestive heart failure.

    Again so sorry for your loss. My mom is turning 80 this year and is in better shape than me. I hope to start spending more time with her because we both need to spend more quality time together.
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  10. jumboscampi

    jumboscampi WELL KNOWN MEMBER

    I am crying again myself now. I just miss her so much and I wasn't thinking when I wrote that post of how many others have been through that kind of situation themselves or other stories of how they may have lost those close to them as my mother was to me. And then also to live with a body that just wants to break down sometimes no matter what medicine can offer, such as dementia, Ehlers Danlos Syndrome and when your heart or brain becomes impaired, it's a fight to keep it working. I too have mitral valve prolapse, not due to rheumatoid fever, but because of my EDS. I also have an aorta that will likely rupture if not surgically corrected and I haven't decided what to do about all of that yet. But slogal, that doesn't mean that you give up your fight to live and keep that precious heart going. Do ALL you can do to avoid congestive heart failure. The brain eventually doesn't get enough oxygen and blood into it and that's why the dementia type symptoms set in. And, trust me, it was quick! One day she was totally coherent and literally the next and forward for that week, she was like a child and eventually couldn't even speak. It was aweful to see. Michele, I thank you for sharing your story with us. I'm so sorry for what you went through and for the ongoing agony you're feeling too. I'm now obviously suffering the same emptiness as you and I have a shoulder big enough for all of you if you need one to use, ok?? I love you guys and thank you for caring and sharing with me.
    And by the way, Mom's ashes are home now, (she was cremated on Ash Wednesday if you can believe that!) here in the house along with one of my brothers ashes that I lost to cancer and I was his caretaker through all of that too until he died 3 years ago. She missed him and there urns are sitting next to each other right now. We're going to start looking around for a mosaleum where we can all be together one day. There are 4 of us siblings left.
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  11. chillymellow

    chillymellow WELL KNOWN MEMBER

    I feel bad for my children who are going to be feeling bad later on. Guess it's good I'm feeling it now because I won't feel it later.
    It's sad to know you are hurting but I know you will find things in this world every day that show you your mom is still and always with you.
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  12. Mben

    Mben No Deposit Forum Administrator Staff Member

    We're here for you, jumbo. :heart:
  13. Mben

    Mben No Deposit Forum Administrator Staff Member

    Exactly! This is why I cry when I think about the day I have to leave my daughter and grandkids. I cry for them now because I know the hurt they are going to feel one day.
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  14. jumboscampi

    jumboscampi WELL KNOWN MEMBER

    And to think that it has been going on for thousands of years. I came to say to myself right afterwards that it was just my turn to hurt like that and also thinking that life isn't fair in that regard but then you can't live forever and honestly, who would really want to I guess. You know what I mean right? But yeah, to think about my kids and grandkids hurting like I am now breaks my heart. I'm glad I posted this after all. It seems that there are those of you too who need to talk about this horrible subject. Maybe, all of us by sharing our stories can lend a sense of love and healing and a better understanding for why and what we are feeling inside ourselves. I hope so. I feel a little better from these postings myself.
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  15. PMM

    PMM No Deposit Forum Moderator Staff Member

    Yes, your post is one that hits close to home with all of us. Sometimes life doesn't seem fair, but then I remember that Jesus promised me I would see my loved ones again in Heaven. I'm not preaching, I just believe in that promise. Our separation, is only temporary.
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  16. jumboscampi

    jumboscampi WELL KNOWN MEMBER

    Gosh, I guess I should have kept that topic in mind when I wrote what I did. Me for myself, I'm just not sure about life after death BUT I promise you that I have seen some strange things, like shadows and other things that make me say, "well, if there isn't life after death, what was that??!!" So, I am of more of the Jewish faith although I am not orthodox nor in their synagogue church, but, I obviously can't say one way or the other as far as all that goes. I know we are a creation of a higher power, God, and my faith in that is strong and is what keeps me, and most people, going stronger than ever sometimes after a hard blow in our lives like losing those closest to you. I also believe that something good will always come from something that seems to be so "bad" if you just believe that it will and be the best human that you are capable of being, not perfect, just the best you can be.
    thank you Pam
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  17. PMM

    PMM No Deposit Forum Moderator Staff Member

    It really doesn't matter what you call your "God" Just that we realize there is a higher power. You are exactly right Leslie.

    And you are welcome. You are continually in my prayers while you deal with this hard time.
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