Meningitis Is A Horrible Disease

[Josie038]

July of last year, I lost my mom (59) after a two week battle with a very fierce strain of bacterial meningitis; she never ever gained consciousness, so we never got to have a final goodbye with her.

The doctor told us the meningitis she had ravaged her brain to the point where there was very little brain activity, she was put on life support and after many heartbreaking visits with the doctor, it came down the fact she was never ever going to come out of this state, there was no hope of recovery! That is when my world collapsed around me! We were left to make a heartbreaking decision my dad, brother and myself and that was do we take her off life support? We knew that it was the right decision, but still a horrible heartbreaking decision none the less, I never ever in my life want to go through that again.

The day that came to take her off the support was such an agonizing painful day, as we knew that this was the end! I’m quite angry with the doctors and the nurses because they never ever warned us of things we might see that could be completely upsetting as when they took the tubes out it appeared that mom had woken up and was wild looking, like what the hell had we done to her! I completely freaked out thinking that we had made the worst decision. I later found out that it is common for patients on life support to react that way! Six hours after the life support had been removed, mom passed away!

Eight months have passed and I relive that day everyday like it was yesterday, somedays the pain is just so unbearable, it just seems like my brain doesn't want to comprehend the fact that she is truly gone. I miss her so much!

We are forever left with questions like how did she get did and why? the doctor has told us we will never know those answers!

I feel that my mom's family has totally abandoned me, as I never hear from them and if I see them, they never want to talk about her and what happened.

[mduwyenie]

Dear Josie038,

The loss of a loved one will always tear your heart away. My mom passed away a year ago Monday(4/7/07) of ovarian cancer. I will never; hopefully in my life time, deal with what you had to deal with when you had to take your mom of life support. That must have been a very hard decision to decide. I think most of us what to believe that miracles happen to others, and why can't it work for you and your family. My mom went so fast that I didn't plan the the final moments of her life like I wanted. Sitting here right now with tears welling in my eyes, because I think about that everyday and I wish I could have known what was going to be the final outcome. The pain is still very fresh and am trying to deal with my grief still to this day. But I just wanted to let you know that others do care and will try to help you the best way that they can. Each individual will travel their unique journey through life, and thank the people that have been a part of your life. Each have brought a precious gift to you.

Mary

[cathycnyrs]

Josie,

I so understand the reliving it part. I can't remember any other day seven months ago or two months ago, whatever... but something makes me want to remember the lost peices of that day. And some parts are so clear that they replay like a movie in my head, especially late at night and early in the morning when I am alone with my thoughts. I sleep with the tv a lot, I guess trying not to be totally alone in my thoughts.

I've never really been close to my Dad's family. We moved a couple of hours away from them when I was a child and the rest of them have still lived pretty close to each other. A couple of years ago a cousin moved close to us. My Dad started visiting and all of the family that lived two hours away started coming out this way. The day my Dad died, my cousin was at the house before the coroner was. Since then he has become like a brother to me and has been going to my mother's usually weekly to do chores, things she can't do. It has started being Monday every week, they spend the day together and then my sister and me and my child meet them for dinner out. This cousins dad is one of my Dad's surviving brothers and now me and my uncle have just started calling each other. He called and a few months later I called and now we talk. My mother talks to his other siblings and I know the other brother gets upset everytime they talk, so they don't talk much. I really have a desire to bond with these people that are familiar to me because of the traits and characteristics of my Dad that are familiar, but in all honesty they have been strangers to me most of my life. My cousin has become a brother to me and my sister, the one we never had. I know it is going to take work to keep it going. I also know it is a two way street. I am going to try and pick up that phone and get to know these people. I found a paper plate layed on my kitchen counter after the family left the day after the service from my uncle, the one that I has probably had the hardest time. I have wanted to call and haven't. I know I need to. A year and a half ago all my Dad's siblings were living. Their mother died at 94 about 10 years ago. A year before my Dad died, a brother died, 6 months later another, then my Dad. Three in one year and two days. I have spent long nights on the phone with my mother about these people, about my parents courtship, and I really want to find out more and know I need to write it down to keep it from fading from my memory. I fear it won't be many years before they started dying off one by one.

When I have talked to my cousin and uncle, we really haven't talked about him as much as we have just talked. I was drawn to that uncle at the Christmas party and he knew so much about me, my kid, my house and my job. He looks so much like my Dad and it was almost like having a piece of him back for a moment. I guess what I'm saying is if these folks pull back from me, I want to make it happen. I want to know them and I know that is going to take some work. My advise is call them, and don't go for the deep conversation if they can't handle it. I have to admit I need to pick that phone up because there are 2 brothers and 3 sisters living and I have only talked with the one brother myself, the one that made it easy on me.

I also got a new computer right after my Dad died. I really wanted one that could do fabulous things with pictures. I got a great scanner, printer and so forth. I have borrowed pictures from my mother and other family, scanned them made copies and returned them. I sometimes cry my eyes out looking at the photos but I know I'm blessed to have them.

I also didn't get a chance to say goodbye. I guess that wasn't in God's plan. Part of me feels in my heart that I've said goodbye in months since then. I feel that I've talked to him daily and he just knows. I also feel he was in the room with me at work the moment my mother called and he was also in the house with her and my child. I think I knew his spirit was already somewhere else because when they told me they were doing CPR I knew it wasn't going to bring him back. My cousin on my mother's side told me that she wrote a letter to her Dad that she had read at the funeral and I thought, I could never do that. The morning of the funeral I woke up at 5:30 in the morning and grabbed a notepad and wrote a letter that was read at my Dad's funeral. It just fell on the paper. I know your mother's funeral was 9 months ago, but that letter brought me a lot of peace. I pull it out and read it sometimes. It was between me and him. I know he heard every word and probably helped me write it that morning. I even buried a copy with him. Writing down our feelings helps sort it out. I don't believe it is too late to say goodbye or too late to tell her anything you want her to know.

Sometimes I feel if I had ever asked my Dad how he would have wanted to die he would have said in his sleep. I know he was worried he would have a stroke and be like a friend of his and a vegetable for years and years. I still ask why it happened like it happened, but I know the answer is it was his time. I'm still trying to make sense of it all and I'm sure it never will make sense.

She lives on in you and her spirit is with you. God bless you.

[Josie038]

Thanks for your kind words and support, this has definitely been a long hard road to get through! Everyone keeps telling me it will get better! Somedays are definitely better than others!

[shauna marie]

My heart goes out to you, Josie.

I can understand the wanting to know what happened. With my mom, I will never really truly understand. Though she was just three weeks from her 57th birthday, they never did an autopsy. She had been seriously ill at the time mentally and physically; no doctors could ever actually pinpoint what was wrong with her. I've always felt that the reason they didn't do one is they didn't want to find something that could have actually been fixable. I know that even if she'd had a name for her illness, she never would have beat it anyway--she was too far gone after our father's death. And she was gone, the three of us (my two brothers and myself) could not have dealed with actually knowing. It was too much. Now that time has passed, I sort of wish I knew. I know you know what your mom had, but I mean that I know about the wishing HOW it happened, etc.

I have to ask you one thing. Even if the doctors and nurses HAD told you what does happen when you take a person off of life support--you really think it wouldn't have affected you the same way? I had realized for months that my mom wasn't going to see Christmas, but in no way was I prepared.

I know full well that to other family members it's like my mom never existed. Some people just can't deal with such things. It's best to just spend time with those who understand and can help you. I had to alienate myself from a lot of people that didn't understand, but I needed to do it to take care of myself. Unfortunately, a lot of those relationships didn't survive, but that's ok.

I relive "that" day myself. She was my mom for over 27 years, but it's "that" day that I relive. For me, the reason is that I need to deal with "that" day and once I have, other days will be remembered and "that" one will become less important. I kind of think of it as a large bruise. Each day it gets a little bit smaller and a little bit less noticeable. Let yourself think about "that" day. A lot of things happened to you on that particular day and it really only began with the fact that your mom died. You had to make decisions you never thought you'd have to make, at least not now. You lost a parent. You lost a great friend. You had many more things happen to you on that day, more than I can list.

It isn't easy. It DOES get better and easier to deal with. Just it's an adventure finding your way out of the forest and not a darned thing can really help. One of the best things that I can say is that they forgot to put it in the manual. I wish they would give us a manual in times like this. There are the "normal" things that people talk about...but how do you deal with the fact that your mom will never make you a birthday cake again?

Take care,

Shauna

Edited April 24, 2008 by shauna marie

[Josie038]

My heart goes out to you Shauna, sounds like you experienced something similar!

Unfortunately we knew what had taken mom from us, not that it made it any better or easier at all, but at least we have a name for it. I always thought if the doctors informed us of what was going to happen I could be better prepared, but you know truth be told, nothing could’ve prepared us for that, it was horrible! Especially seeing a loved one in that condition. I am like you I relive that day over and over again wishing it was a bad dream and that she is going to come home to us! That day is always there and will always be there! I’ve been told it gets easier and that the good memories surface, which I want, I don’t like seeing that day!

You are completely right about that day, things we had to decide on that should’ve never had to be decided, my best friend and confidant now gone and so much more that I’m only discovering as time goes on.

What I don’t’ understand about her family is, how can you ignore the fact she died? She was your sister, daughter. Trust me I know it’s painful, but come on! I told my dad, if it’s continues I can’t be around people who don’t want to talk about her, she was a wonderful person and not to talk about her is a disgrace to her memory.

You got that right about it being an adventure as you are the only one who can work through the jungle of pain and frustration.

How long ago since your mom passed?

Today is my birthday and the first one without mom, so far it’s been very sad and painful day.

[shauna marie]

Josie,

My mom has been gone for two years and almost eight months. Wow. I think I like writing the months out better, that just seems so long.

I'm sure there are doctors who deal with say, cancer patients, all the time who have nightmares about their loved ones death. And I hate to say it, but if I had been watching your mom's final hours on tv, I probably would have had to ff it, it sounds so horrible.

Have you asked people why they don't talk about your mom? Remember, there could be a thousand reasons why they don't. I'd be careful though in making sure you actually WANT to hear the reason. I don't mention my father very much and I have good reasons for that. I refused to even cry at his wake/funeral. Actually, I kind of made myself cry at his funeral, but not because I was missing him. I did it because everyone else was crying. I was actually crying for the father I never had. It was so hard. My father had two different complete sides and all of these people only seen ONE side of him, while I got to see the other side. A lot of people judged me on that, not realizing the damage he had done to me.

Take care,

Shauna