A place to talk death and dying issues
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Hi Texasrose and everyone else. It is nice to hear that others don't think it's beastly placing her. I love this kid to death, but she is lots of work. Mostly it's the cirrhosis that worries me. She has been worked up for an eventual liver transplant and they think she will do really well, once she gets it. But this continual dance of chasing ascites and diuretics and replacing vitK (clotting) etc... this has been going on since 2011. She gets too tired to do much, so we all feel like we are under house arrest. My middle daughter in particular resents babysitting continually - even if she is paid. I have been taking my youngest to basketball practice M-Th.
My DD daughter signs only to communicate and our whole family signs. Teaxasrose is so correct when she said that many facilities say they have staff who sign - but it's so limited as to be useless. My daughter signs really well, fast and will even bounce back and forth between ASL (American Sign Language) and ASL signs in English word order - which we use around the house and when speaking. It breaks my heart to think of her being placed in a home where no one signs. It would be like a hearing person going to China with no hope of ever being able to speak to anyone. Thankfully Anna can write pretty well, at a third grade level.
Plus we have toured homes and some are so dingy and lifeless, it's sad. I want to find someplace warm and full of other deaf DD folks like my daughter. She deserves a community of peers and normal conversations. It keeps their minds sharp and emotionally it's more healthy. There are 2 wonderful deaf only group homes here and they are always full. We toured the home and I was just charmed at how the residents wanted to show us their rooms, share about their activities. It was clear they were proud and happy to be living in that group home. Pray we find something like that with staff who can follow her diet and keep the medications straight.
You are right about needing to give quality time with my other 2 kids and husband. For the last 19 years this child called the shots, we did what she could tolerate, left when she acted up, didn't go if she refused. We spent an hour trying to get her out of our van during a trip to San Diego. We couldn't leave her in the van - too hot and so we all sat in the parking lot until she decided she would get out. It gets old and wears you out. She can be a real sweet heart too. Many times she's a hoot and funny.
My cousin is a nurse and will be my daughters guardian when my husband and I pass. Everyone in our family loves her and will look out for her. I am lucky for that. So the search continues. The state and county just did their assessment, now we wait. Wish us luck. I wish us all luck.
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Rosevalley- I hope/pray this transition will go as well as it possibly can. Which area do you live in? I can ask my mom, whom has a vast network of deaf friends all over the US, to see if anyone knows of a good facilty with sign. (As you know if there is someone who can sign within 40 miles a deaf person WILL find them!) Growing up we knew which businesses had employees that could sign etc...
Also there are big hearted people out there that take in children like your daughter. I knew of someone that took in only Down's Syndrome children/young adults. I honestly don't think a larger home would best fit your daughter, sounds like she needs a lot of one on one, maybe a small group home, or even a private one... Let me know and I will get my CODA feelers out there! Feel free to PM if need be.
Also one last resource- there is a deaf adoption group through yahoo groups, its ran by someone named Gail- these people are really in the know! In my other life (pre bc) i had dreamt of adopting a deaf child. My dad was born into the foster care system, and wasn't adopted til he was 12 b/c of the deafness. Then his adopted mother refused to learn sign. This was in the 60s and sadly not much has changed in the world today.
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Rosevalley, I hope everything works out and you find the perfect place. It will put you so much at peace to have all that taken care of. My biggest prayer is that my youngest adult son who is 30 get his life together before I go! We all have our struggles other than BC. I wish you well!! Hugs!
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Get her on the waiting lists of both the places you like right now; just in case there is an opening (you can always withdraw her name if you find someplace you like better).
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Absolutely get your DD on the waiting list -- even if you think there is little hope... because The Universe has a way of helping us when we need it most... at just the right time.
My best friend was care-taker for 10 years for her (alzheimer's) mother -- until her mother's death -- and then almost immediately was awarded custody of her 60-yr-old-Down's-Syndrome cousin, when her aunt died, soon after.
Another 10 years of care-taking and now Georgie has alzheimers, too. Both of these responsibilities were about people she loved very much, but anyone who has done care-taking knows how all-consuming, occasionally-exhausting, and life-altering it is day-in-day-out to be fully responsible for another person.
When Shery began having her own heart-problems, she began trying to find a group home for Georgie... (with many of the same complaints about care/cleanliness/cheeriness as you, RoseValley). But she found one home that seemed perfect -- and put Georgie's name on the list, despite the guesstimate of a 5-year wait.
It took nearly 4 years -- but just as Shery was at the end of her rope re her own health... she got the call that Georgie could move into the group-home of her dreams. He is quite happy there, but his own health is deteriorating quickly, and thank God (!) that the home took him when they did, because Shery is in her late 60's and simply no longer has the physical strength to care for Georgie the way he now needs.
Best of luck,
Linda
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Linda, thank you for posting your experience with your daddy at the end of his life.
My precious Momma passed away on 12/31/06 from a 9 year battle with lung cancer.
My brother, sister, daddy and myself were her caregivers. Mostly Daddy and my brother, then my sister moved back home and I came home (I live 3 hours away) a lot.
Hospice came to our home the last 3 weeks and they are all angels sent from heaven. They were there anytime we or Momma needed anything. Sometimes we didn't know we needed it but they were there to offer it. Momma's death was very peaceful and that's the way she wanted it.
She wanted a viewing then a funeral service at the funeral home followed by a short graveside service. My sons, nephew and life long family friends were pallbearers. Momma wanted a viewing and again, she always knew what she wanted and got it too. She knew that we would see old family friends, high school classmates, people we grew up with, family that we'd not seen in years, etc. And they all came to say goodbye to Momma. Because of her we have all connected with friends and family that we've not been close to in years and years.
That last day, I was leaving to come home to get clothes, sons, hubby and going back. I had been there for about a week and Momma kept telling me I needed to go back to get things in order with hubby, etc. Before I left, I sat for a long time just talking about the holidays, things we used to do and how much they meant to me. When I got ready to leave, I bent over and whispered in her ear that she had done a great job with us and that we knew she was tired and we would be fine. We knew her wishes and we knew that she loved us and that she would be waiting for us in heaven. I told her that she would be together with her Momma, Daddy, Sister and Brother and what a reunion that would be. Then I kissed her and told her I would be back the next day and I would make sure her wishes were followed to a T.
I got about 20 minutes down the road and my brother called and told me that she had passed away with a smile on her face and it was so peaceful. The visitiation and funeral were beautiful. My sons were so upset and my youngest (he was 27) said he could not leave her at the gravesite. I told him that his Mammy was not in the casket....she is always in his heart. His brain knew what I said was right but his heart didn't want to let go of her.
I think she was hanging on because she was worried about her kids....when she died I was 50, my sister was 49 and my brother was 44! I still miss her as much today as I did then and cannot bring myself to celebrate on New Years Eve....yet. We plan on having a celebration of her life next New Years and I know that's what she would have wanted.
My DH and I have made our wills and our advanced directive and will plan on planning our funerals, etc this year. We've made it a priority since I believe that by planning things now, will help our family that will be left behind.
Thank you again for posting your experiences, Linda.
God bless y'all,
LaDonna
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Bump. Bon's fantastic to do list is on page 18 if anyone is looking for it. I guess the mods never noticed that we hoped this thread could become a sticky. Wonder if they would consider the to do list as worthy of a sticky.
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wowee wow wow. You guys have a great pool of info here. I will be printing the list today.
Do you know generally who to call about donating body to science? My friend from New Orleans says they will not return her mothers ashes, so I need to check in my state.
WOW
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I would think university medical schools would be the first place to check. I imagine there would be a contract spelling out the disposition of cremains. Good question.
This thread is Ma111's legacy and gift to us.0 -
Bon check uniformlaws.org/Act.aspx?title=Anatomical%20Gift%20Act%20(2006)
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sorry i cant post a link but it can be cut and pasted in your browser!
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thanks! google chrome wont let me access my clipboard on this site, no copying, cutting or pasting- drives me crazy!
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I was thinking of donating my body to science, but the requirements were not worth it. You have to be within a certain BMI and other stuff. It just seemed like too much work for a dying person.
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Both my parents donated their bodies to science, university medical schools to be specific. They did it through their local funeral home. A mortician had to be involved and designated as the receiver of the body after death, so that they they wouldn't do incorrect embalming. They have to do something different in order to preserve the body. Free cremation was a part of the benefit of donation. Return of the cremains to the family took a year for my dad and 4 months for my mom.
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I found instructions on the medical center website, as you all suggsted. I think it will bother my DH if I go this route. It would be unsettling for me if his body went that way.
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that is who I have donated my body to...I don't have life insurance and don't want my kids to pay for anything.
Sandy
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I have donated my body to science as well and have explained to my family that this is my desire. They will come and pick me up, no mortician involved, and will return my cremains when they are finished. It will cost my family nothing so I've instructed my DH to have a great party after the memorial service with the money saved. I didn't have to meet any stringent requirements but did have to fill out an application and wait for approval. It's the Anatomical gifts registry in Hanover, md and they have a website that answers all questions.
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hey Blondie that is different... cremains in 3-4 weeks. I was imagining lying in a cold vat of formaldehyde for 2 years.
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I have read a few of the pages from the beginning and a few of the pages here at the end (stumbled upon this post yesterday)...and today i was thinking, in the shower, what a unique situation i am in (I'll speak for myself)...I get to have a chance to tell the people i love the most all the things i want them to know. I get to have input as to what I want my service to be like. I get to leave my family with some financial security (thank God for Dave Ramsey and buying a big life insurance policy)! I still could die from a car accident, but I just thought in the shower, what a strange blessing? That's not really the word, but it is. I've always wanted to donate my body and be cremated. I'm just finishing up chemo in the next two weeks. I have a 22 month old and an 8 year old...so I have just begun my fight because i have goals to see them grow up. I appreciate this thread though because no one in my family wants to be practical.
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well glad you did...for me I have no life insurance and don't want my kids to be burdened with any expenses....I have no assets, I rent my home and actually someone is paying my rent for me....my car is 2007 and is not inspected....I only have the contents and my jewelry and personal items.....donating my body to science is the way to go for me....I am adopted and my biologicial mother died of a recurrence of BC after 15 years and died within 3 months.....me 14 years and I am still here 3 years later....if it will help anybody it is worth it for me. Also I am single my kids (5) and grandchildren (7) are all I have so I get to make the decisions like I wrote my own obit (my kids don't know anything about me before them) and the celebration of life I get to decide if it is before or after I am gone (there are people (sil)) that I don't want there...and although I am not a control freak (but is sounds like it) it is the last thing I can control....soooo, will, lol
K-lo, well that is refreshing isn't it.....they pay for everthing, cremate you and send you back, free of charge, works for me!! I sent all te information a couple of years ago, do not seem to be qualifications that I am missing...and cancer doesn't boot you out of the program...works for me....
Sandy
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Kjones, I know what you speak of.....I believe I read something similar somewhere that described the situation we are in as a 'privlege'. It almost sounds odd, because we think of a privlege as something without a certain kind of heartache attached to it. One definition of privlege from dictionary.com: a right, immunity, or benefit enjoyed only by a person beyond the advantages of most. Perhaps "enjoyed" is not the correct way to describe this, but in some ways, the description fits.
blondie, I know just what you mean about wanting/excercising a certain kind of control over the situation. I am like that too, and make no apologies for it.
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http://getyourshittogether.org/checklist/#.URe4QqN5mSN
Found the above website by accident (or providence).0 -
Scuttlers......LOL. That is so, so......I don't know what to call it but it sure gets our attention for something we all must do. Lucky find, thanks for sharing. Double post caused by humor.
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Scuttlers......LOL. That is so, so......I don't know what to call it but it sure gets our attention for something we all must do. Lucky find, thanks for sharing.
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Scut that does kick my butt into gear. No one else gets it..... nor do I feel like bumming them out with it, so thanks for being here.
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thanks so much for the information, i truly appreciate it.
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Bon, sweetie what a work, congratulations from the rest of us!. Everything in such a short space, bless you
L&H&P's sheila0 -
Thanks Bon!
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BUMP
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