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  • My angel marcia

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    Old 07-22-2006, 05:50 AM   #16
    shawm
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    Re: My angel marcia

    I JUST KEEP WAITING FOR THE OTHER SHOE TO DROP AND WHEN I REALIZES HOW FINAL MARCIA'S PASSING IS I'LL FREAK OUT OR SOMETHING...EVERY TIME I SHOP AT FRY'S OR WALGREEN'S OR OSCO, ALL I CAN REMEMBER IS HOW MUCH SHE ENJOYED SHOPPING FOR DATE BOOKS FOR ADDRESS BOOKS...I WAS IN WAL-MART YESTERDAY AND WAS IN THE SCHOOL SECTION AND SAW A LOT OF THINGS THAT MARCIA WOULD ENJOY...I'VE BUILT A SMALL SHRINE TO MARCIA IN THE HALLWAY TO MY ROOM...PICTURES, ANGELS, HER CABBAGE PATCH DOLL (LOOKS LIKE HER,EVEN HAS SHORT HAIR LIKE SHE HAD) FLOWERS FROM THE SERVICES THAT I DRIED AND THE BOX OF STUFF FROM THE MORTUARY...I JUST ALWAYS THOUGHT THAT SHE WOULD BE THERE AND WE WOULD ALWAYS BE TOGETHER...I WAS FINALLY ABLE TO PUT HER STUFF ON THE DINNING ROOM TABLE WITH THE STUFF I'VE ASSEMBLED IN MY HALLWAY...HER PURSE AND WALLET AND "WORK"...IT HARDLY SEEMS POSSIBLE THAT LESS THAN 2 MONTHS AGO MARCIA WAS HERE AND NOW SHE'S GONE...JUST LIKE THAT IN THE BLINK OF AN EYE...AND WHILE I KNOW SHE'S IN A BETER PLACE AND WITH NANA GRANDPA AND MOM...I CAN'T HELP BUT MISS HER EVERYDAY...THANK YOU

     
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    Old 07-27-2006, 03:56 AM   #17
    shawm
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    Re: My angel marcia

    Last night I took another route to work last night and drove by the Walgreen's that Marcia and used shop at...all I could think of was how I was always in ahurry to get going and how little she seemed to want...shop a little and do her work... play with the dogs and listen to her radio...her room was as bare a nuns room...no art on the walls..no dresser...very few nick nacks...she had a set amount of clothes that she wore and nothing else...sleeveless t-shirts and stretch pants...sandals...anything other than that would be take out her room and put somewhere else...she had 2 plastic 3 drawer cabinets and a hamper...her clothes where compressed to make room...he bed was pushed against the wall to make room...I bought her an area rug to keep her from spilling on the light colored carpet that came with the house...when she was little she had impeccable manors and was so neat and tidy with her room.l..she had a room full of small furniture and used to rearrange it almost daily...from time to time she would edit out a piece of furniture and bring in a new piece...she cleaned her room and did her own laundry...she bathe 2 times a day for hours on end...we called it her spa and used to say she was at the spa...she was very neat about herself...during the last 2 or 3 years she began to stop doing her laundry...I used to tell her5 not to wash every day and to wait till she had more than 2 pieces of clothing...mother and I tried to get her to stop rearranging her furniture but eventually I realized that this was almost a hobby for her and she really enjoyed it...she used to like going to the Peoria reccenter and dancing but the last year or so she just stopped going... I don't know what changed her mind...I know that it was better not to ask her but just to let her know to get readdy to go to the dance...or to go to day care...I feel like I made a big mistake by selling encouraging Dad to move to a smaller house...her respite person stoppped coming and she didn't have any day care center to go to for over a year...by the time I found her one she only went for a couple of months...then I was so wrappped up in taking care of my Dad that I was unable to take her over and the van schedule was too early for me to be able to get her up in time for them to pick her up...she seemed to lose interes in bathing taking care of her laundry or going anywhere...then she got sick and she never really recovered from that...pneumonia and valley fever, UTI...she was in a skilled nursing facility for a week and there wasn't any rehab to speak of 1/2hr a day maybe of physical therapy and occupational therapy combined...they kept saying she was incontinent because she wasn't able to get up to the bathroom by herself...I came in one day and she was in bed and wet I made them clean her up and tried to tell them she was on a foley in the hospital and was still very weak from being in bed all day...My sister and I finally got her out of there and she was able to use the bedside commode and a walker to get about the house...I was giving he her breathing treatments and helping her with her meds...her apptetite was very poor and but she drank a lot of water which was unsual for her as she had never been one to drink water before...this lasted for about 2 weeks and then she got sick and I had to take her in to her primary care md...while we were there she had an episode and got confused and SOB and unresposnsive...the md and I just looked at each other and felt she needed to go to the ER...by the time the paramedics got there she had had a breathing treatment and a GI cocktail...they seemed a little sceptical as to why we feltshe needed to go to the ER...by time the ER md saw her she was responsive and her vitals were much better...the md seemed to feel I and the PCP had been a little hasty in calleg the paramedics...and why was she there anyway...I work at this hospital and I have seen people admitted for far less that that...we went home and a week later she was unalbek to get out of bed becauce her leg had swollen and was very painful..."Every time I call 911 about a dozen paramedics come and the always seem to question why I am calling for help...this made me hesitate calling for over an hour...I finally called and they agreed that she needed to go to the ER...her leg was painful and she had a fever and was SOB...she had blood clots in her left leg and she was feverish...they were unable to put in the filter that would keep the clots from traveling to her lungs or heart because her bleeding time was too high...2 days later they were able to put it in and put a PICC line to help them take blood for labs...I can't believe how much they did to her...arterila blood gasses and a foley and lab tests up the wazooo... I didn't think a human could go through all that and not be screaming her head off...she was so brave and didn't complain...maybe this was part of the problem...she was never able to let us know if she was in pain or sick...the only way we could tell was when she got very quiet and didn't want to do anything...I found out that if her hand were very warm she had a fever...this was 100% accurate...the last 2 days before she passed away her heart rate was over 100 and her blood pressure was way too high...her breathing was very shallow and fast...I can only hope that she was not in any pain...I went to work very reluctanly and when I got there my coworkers Deb and Rosie said just go and be with Marcia...I stayed with her all night and one of the last things I was able to do for her was to give her some Pepsi by using the sponge mouth moisteners and dipping it in the Pepsi...the morning she passed away i was looking at her and when I opened her eye to see how she was doing both her pupils were dilated...they called a code and had the rescue personel work on her...while I was waiting I called Dad and Linda to get over there as quick as they could...by the time they got there I had been in to see her and I again looked in her eyes and only one of them was dilated this time...they worked on her again and one of the nurses aksed me if she was a full code...meaning resucitate her...I said yes and as they were working on her they asked me if I wanted to see her...when I saw her they were doing CPR and god knows what else...I just lost it and screamed at them to STOP IT THEY WERE HURTING HER...TO JUST STOP IT SHE CAN'T TAKE IT ANYMORE!!!!! and by that time my sister and Dad had gotten there...the doctor came in and told us they could keep bringing her back but there wasn't a lot they could do for her...the 3 of us made the decision to let her go and we all went in to see her....I whispered to her that it was alright to go and be with mama that she had finished her work here and that we loved her....then she was gone I later realized that they had called security because I had freaked out...my sister and I made the cremation arrangements...the mortuary people were very nice and the services were very peaceful...I had them play Michael Bolton for the service and the viewing...it was very healing...about 2 weeks later I went over to get her ashes...my Dad has a hard time looking at her picture without feeling guilty about her passing away and what could he have done for her that he didn't do...H's take it very hard and I still haven't fully realized that she's gone ...I think I'll close for now before I accidently erase my blog...thank you

     
    Old 08-15-2006, 02:39 AM   #18
    shawm
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    Question Re: My angel marcia

    I guess I'm looking for forgiveness that I can't seem to give myself...I feel like I didn't look out for her best interest regarding weight and excercise...she weighed almost 240 lbs when she first got sick and enven then I was unable to persuade my Dad that even though he wanted to eat it didn't mean that Marcia neede or even wanted to eat...she never turned down any food...I even went as far as locking the cabinets in the kitchen...and I was not able to keep her going to any outside activities...she would always say no if she was aked to go out but if you just told her to get ready to go she would pretty much agree and get ready to go...Dad never wanted to push her to go and Mom did the same thing...so even though I tried to be an example to taking care of my room andk personal hygene and working full time...she looked to Mom and Dad as examples...not good since both of them were retired...It still seems hard to believe she was only ill for 2 months and then she was gone ...thank you

     
    Old 08-15-2006, 01:49 PM   #19
    Karen W.
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    Re: My angel marcia

    Please don't blame yourself for anything, she had a family who loved her , allot of special needs people cannot say that, I volunteer at Easter Seals, My son goes there, last Christmas I had asked allot of them-"Are you going to see your family at Christmas?", One of them said, no-ever since I was put in the home I never see them or I keep call my family but they never call back, so many of them were just put in a home and forgotten, which is sad, it truly bothered me, you gave your sister joy, love and allot of care, we some times all have regrets after someone we love passes, it's hard, My Father has been gone for 7 years and I still think of him every day, he will always be in my heart. I'm glad you made a special wall in the hall way for Marcia, if she was there she would love it and she would be proud.
    Karen W.

     
    Old 08-28-2006, 11:50 AM   #20
    shawm
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    Re: My angel marcia

    KarenW, sorry I took so long to reply...Between my Dad's shingle and my back spasms it's been a busy week... My Dad had mentioned several times that Marcia wouldn't live past 34 years according to her md...He can't however tell me how the md arrived at this exact age and what he or she based this information on...It's almost like the md put an expiration date on Marcia and she turned 34 this past Jan 8th and then passed away 5 months later...There was never a time that I wanted to put her in a group home...but before Marcia became sick she was so misrable to live with that I wondered if she might be happier in a group home and come home for the weekends...I couldn't seem to motivate her to take care of herself and her clothes or her room Marcia used to be so meticulous about her clothing and person...She arranged her clothing and room in a very precise manor...She would bath 2 times a day and kept her hair neat and tidy...When she ate she was also very meticulous, but she gradually got to the pot where you could tell what she by what she spilled on her shirt...When Mom passed away she never really got over it...When Marcia got upset or confused the would say Moms gone or she would say her borthers names as if to say she would tell them and they would let her do what ever it was she wanted to do...Marcia was always asking me "Why I born?" or "Why did Mom die?"...I tried to answer as best I could without confusing her...I told her that Mom was very sick and very tired and she went to heaven to be with God...I had a little story for her about why she was born...I told her that her Mom, and her Dad,fell in love and got married and had a girl, Me then a girl, then she had a boy and another girl and another boy ...but they needed a Marcia so Mom had one more baby that was Marcia...She was so tiny and cute when she was born and that girl Marcia grew and went to school and graduated form High School and here we are Marcia and Dad and Me Sharon...She would aslo ask "Why I different?" and I told her everyone is different...I told her that she and I were not the same and Linda and her were different and Dad and Mom were different...that all people were different so we could tell each other apart...She aslo felt that her arms were too short, but I told her that they were the right size for her and her legs were the right size also...I hope she felt some comfort in my explanations and my story about why she was born...She always liked hearing the birth story and would ask me to tell her a story... I told her Mom was in heaven with Nana and Grandpa and that we would be with them when her died and went to heaven...I think about her every day and try to take comfort that she is with Mom in heaven...Thank you

     
    Old 09-12-2006, 12:44 AM   #21
    shawm
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    Re: My angel marcia

    One of the pts passed away last night at the hospital that I work at...It brought all those feelings I had in the days after Marcia passed away...I know in my head Marcia is gone and isn't coming back but in my heart I want her to walk down the hallway and stop at the edge of the hallway and look around the corner into the spare room office like she always did just in case someone is in there...There is a symposium on Sepsis that I might be able to attend and maybe I can unsderstand how it all happened so quickly...Good night Marcia I love you and miss you everyday see you later

     
    Old 09-14-2006, 11:57 PM   #22
    shawm
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    Re: My angel marcia

    I finally wrote a tribute for Marcia for the Garden of Gratitude in the hospital where I work...she will be on the same wall as my mother...I took the extra things out of Marcia's room not only because I'm goin to take them to auction but because I still think of it as Marcia's room and she wouldn't like me putting my things in her room...as far as I'm concerned it's still her room and nothing is changing anytime soon...and even though one of her doctors told my Dad she would not live past 34...Dad has mentioned this several times, the md never said why he said this and how he came up with that particular age...I feel like he put an expiration date on her and she fulfilled his prediction...I just feel like I could have done more for her...is this my desire to control her or am I trying to help her live her best life?...I don't know ...I do know that anyone that met her immediately liked her...she was so kind and gentle...she had her moments but then don't we all...thank you

     
    Old 09-20-2006, 11:53 PM   #23
    shawm
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    Re: My angel marcia

    Now I'm wondering if she somehow had premonition that she was going to die...after the strange incident at the doctor's office where she just didn't look right and by the time she got to the hospital she seemed to have recovered...she almost seemed to withdraw and in retrospect she was talking very little...not like before when she would chatter for hours with her imaginary friends...she had always stayed in her room prefering to do solitary things like drawing or cleaning and rearrangeing her room...but the last 5 months before her passing she really kept to her self and seemed unusually preoccuppied with why Mom and passed away and why she was born...sometimes I think she's going to come out of her room for a soda, pausing at the end of the hallway to see if someone is in the office/antiques room...I keep thinking about this mystery doctor and the fact that he /she told Dad she would not live past 34 and what he or she based this prediction on and why they felt it necessary to make any kind of prediction...thanks for listening

     
    Old 09-25-2006, 02:29 AM   #24
    shawm
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    Re: My angel marcia

    While we were over at my sister's the other night, we were talking about Marcia and got to talking about this thing Dad keeps saying about Marcia not living past 34 year...Linda now seems to think the md might have said she might not live past 3 or 4 years...this may have been said because heart problems are a part of the syndrome...she never had that problem but the md may have thought all DS had heart problems...I even went so far as to e-mail a support group for people with DS and their families...no new info but they were very kind to take the time to reply...I added a new picture to Marcia's area...I just can't seem to stop myself...it seems to help me keep her closer to her...thank you

     
    Old 09-25-2006, 03:58 AM   #25
    Katiebelle
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    Re: My angel marcia

    Marcia was wondeful and well loved, thats very clear.

    All parents and caregivers of individuals with Downs think we can or could do more. Its a permanent guilt we carry. I have a little boy Samuel 6 years with Downs and I always feel there is so much more I could be doing for him . Its like whatever I do its never enough. You try not to let it take over your life but its always there . I lost a niece to sucide last week and we all are asking this same question . Is there more we could have done ????

    Its not a question we will ever have the answer to. So the questions you are aksing now are common to both family members of those with Downs and of those who lose family members ( ds or not )

    Have you thought that mabye the doctor gave a 34 age because people with downs were just not expected to live past their mid thirties back then ??? I remember a mion with DS reaching 50 when I was child and it was a huge celebration as it was expected that he would not even see 40.

    I just think it was an actually co -incidence that she did actually die this year. So much of Downs seems random. So many why's right from the begining. Why us as parents ?? Why our baby ?? Why our sister/brother ?? You could spend your whole life trying to make sense of somthing like that and never find an answer. Just continue to celebrate her life and cherish her memory and try not to tear yourself apart on this . Sometimes dreadful things happen to wonderful people .

     
    Old 09-25-2006, 04:08 AM   #26
    Katiebelle
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    Re: My angel marcia

    I just wanted to add somthing else , on one of your previous posts you said that you hope Marcia had one all she wanted to do . I imagine she probably did . I think that a lot of people forget the differences thats people with downs have sometimes. My sisters and family were all on for taking Samuel to theme parks and kids parties because they theough he "should" enjoy them . The truth is though he hated them and still does . He enjoys completely different things . Odd things for a child hisd age perhaps but he loves them all the same . Samuel will sit though whole symphonies either on TV or audio. He loves big choral peices. He adores sport of any type and will happily get invloved and try most sports. He does not like christams and all that entails , Father xmas is a particular no go area. We do keep trying him but I do believe you need respect that is an individual and likes different things . Maybe not the things that people think he "should " like buthe has a happy and enjoyable life all the same. He is sunny and smily some days and other days he is a grump. ;-) Marcia sounded like she loved her life and thats what counts. She will always be with you just like your mum.

     
    Old 10-01-2006, 11:40 AM   #27
    shawm
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    Re: My angel marcia

    Thank you Katiebelle for your reply...Marcia was always pretty happy just being in her room whether is was dancing or coloring with makers (not crayons because they were for kids) or listening to the radio and doing her work...she never seemed bored or unhappy...she was always ready to go shopping and her favorite places were drug stores or stationery stores...she liked to get planners and calenders and work with them...purses and wallets were also a favorite of hers...she never liked loud noises especially 4th of July fire works...she never really got the hang of buying xmas gifts for others but she was always happy to get them...she was never fussy about her food but burritos were a big favorite for her...Marica always liked going to school and going to special olympics...she had a lot of fun in her own little world with her "friends" and her music...if Mracia didn't want to do something that was that and nothing would change it...she was not a traveler and although she liked to see her brothers and their families in CA she didn't like the drive...I was usually able to get her to go by just stating that we were going and packing her bag...she would repack it with her choices and was usually happy to go...Marcia had this ability to remember people even if she hadn't seen them for a long time...one time we were out shopping and she said she knew the woman in front of us at the checkout counter...I didn't believe her but as it turned out the woman had been one of her bus drivers several years before...she was a very special girl...I just never expected her to go so fast ...she was so brave and put up with a lot...sometimes I wonder if she had complained a little she would still ber here...it was so hard to tell if she wasn't feeling ok unless you noticed that she got less active and quiet...she would never say if she was hurting or felt bad...I think about her every day and more so when I'm going to work and remember going shopping or just going out for coffee...thankyou

     
    Old 11-09-2006, 06:26 AM   #28
    shawm
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    Re: My angel marcia

    I was visiting Dad in the hospital and we were watching TV when he said to me I keep thinking about Marcia..."she really didn't understand what was going on and that he still thought her...I just said yes I still think about her and what had happened...It kind of upset me afterwards...I know he means well but I think about Marcia every and have a small bookshelf where I keep her special things and he pictures and keepsakes...I have added Mom's special keepsakes there also...I feel closer to them when I see all of their things together...thank you

     
    Old 11-24-2006, 01:01 AM   #29
    shawm
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    Re: My angel marcia

    I was watching a home makeover show and they were talking about how the father had been diagnosed and passed away 6 months later...and I just started crying thinking about how Marcia had gotten sick and passed away all in the space of 2 months...then I was working on her scrapbook putting a few nnew found items in and started to tear up...It almost seems to get worse...I still miss hier everyday and I know she's in a better place where she is with her mother and no one stares at her for being Marcia...sometimes I look at her pictures and think how big she had gotten and what else could I have done to help her with her weight but, then I think she wasn't one to walk or exercise and she certainly enjoyed her burritos...I did try to keep her from drinking too much pop and to get out to adult day care and took her shopping...sghe just never complained if she was ill and I think in the end that's what led to her getting sick...she didn't know how to say she was hurting or short of breath or whatever might have been bothering her at the time...the changes were so subtle that unless you knew her well it would have been hard to know what was going on...Thank you for listening.

     
    Old 11-24-2006, 06:41 PM   #30
    ambiegirl
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    Re: My angel marcia

    Hi Shawm

    All I can say is that you sound like a wonderful sister to Marcia. So caring, so devoted and so loving. She is so fortunate to have had you in her life. There is no doubt that you made her quality of life better by just being you - her whole life and not just when she was ill. You are grieving now and it is very hard to lose a loved one. You should give yourself a big hug, Marcia would want you to celebrate your relationsip with her and to acknowledge all that you gave her. You are a special sister and you deserve to feel peaceful about your contribution to her wellbeing and her life. Every decision you made was with the right intentions for her. You didn't have a crystal ball to know how things would turn out. You really could not have done more for her. I hope that you can believe that and find some comfort in it.

     
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