I am touched by the fact that less than 36 hours after Paul Keene died (New Realm/Diana's Husband), she has received 56 messages of condolence from this group. I see that as a true reflection of the love and compassion we sincerely feel for one another even though we are only connected through cyberspace.
I would like to suggest we dedicate a place on the side bar of our site where we list our loved ones who have died with this disease, going back to the beginning of The Alzheimer's Spouse. List their name (first and last .....or... only the first name if so preferred by the surviving spouse.. with their age and diagnosis..AD/FTD..) I believe this will memorialize them and further demonstrate the impact this disease has on both young and old alike. Diana's husband left behind children in their teens. Others were younger than he was. We should not forget them or their Caregivers after their journey ends.
I had been thinking of doing that. I will do it as a side topic, titled "In Memoriam". However, I need a volunteer to go through the 60+ pages on this forum and send me a list of those who have passed away in the almost 2 years since I started this website.
The side topic will be put up by my new "assistant" who hasn't been hired yet, and it will be done after I return from DC. And hire the assistant.
Carol, thank you! Also, it might help, if we know, how long from diagnosis until passing, and the date of passing (for those of us who would like to send a special note on the anniversary). There was a thread at one point on this topic, I think.
Thank you, Joan, for adding it! And best wishes for a successful trip to Washington!
I'm so glad you all agreed that this was an appropriate tribute - after all they were family to us as well. In order for us to recall exactly who they were, could we mention to the caregiver's name,(ie: New Realm) as a way to remember who they were.
Suggest: Paul Keene (New Realm) 3/13/2009 - Age: ___ FTD (?) "x" years.
How does that look to everyone? I am not sure about the FTD..just put that in for an example. Nancy
OKayyyy... Have just scanned through pages 1-20 looking for obvious entries. So far I have 10. Only redbud73086's is complete and the way she'd prefer, because she put it above. Cross checked with users listings, and everybody is really incognito. Please, e-mail me (in my profile) or enter info here. Suggest that First name of LO can be used alone rather than full name, but that's as you wish. Thanks. Carosi
I am sure Diana (New Realm) will fill in the age part, but we can confirm the rest as true. Paul was her husband's name. He died on Saturday morning, 3/14. I think it was SAturday...looking back, she said she got the call right before she wrote us..and it was PACIFIC time, . I replied an hour or so after her post...and it was about 9:30 or 10 AM here. All we need is his age.
What a wonderful idea. Please make sure to confirm with those who lost their loved ones whether or not they want the information online. There is a lot of personal information that people may not want listed.
I just checked Diana (New Realm) profile and she mentions that Paul was diagnosed with Alzheimers at the age of 69, but she didn't indicate the year that was. I seem to recall that the formal diagnoses was in 2008 (?) She says that he was showing early signs five years earlier.
Vanessa King (dking) died 02/22/2009 at age 51 first memory related doctor visit: September 2005 diagnosed probable Alzheimer, with generalized anxiety disorder: October 31, 2007 diagnosed small cell lung cancer September 20, 2008
Update-- Have now scanned first 35 pages. Have found 15. 5 have provided info. From threads and profiles have bits and pieces on the rest. No e-mail addy's readily available. PLEASE post here or e-mail me: crlsimpson@yahoo.com.
Will continue compiling. Suggestions welcome. Am only using info provided. Need to verify/ok the rest.
Thank you for your hard work. When it is compiled, e-mail it to me, and as I said, I will absolutely definitely give it its own side section on the home page.
Joan, feb 25 -09 is the poem Our Request..which i wrote in mind of all our fellow members who have lost their spouses recently. if you find a place or maybe see fit to relocate it somewhere under your memorial site, feel free. divvi
Entries should, I think, appear as the caregiver would prefer. Example being first name or full name of LO. Then of course whatever info is missing. Easiest would be for them to just enter here or e-mail me with the data. For now I'm using set up like redbud73086's above.
So far, I need to hear from New Realm trisinger NIKKI nanapapa IOWAWIFE TheQueen Bettyhere Therrja Beenthere Barbarakay
As I find any others, I'll update. Carosi crlsimpson@yahoo.com
Carosi, unless I missed something, Nikki's husband is in a nursing home. She lost her dad last year and her mother is ill now. Therrja's husband is alive too.
This is not meant to sound irreverant, however, maybe it will be. Today seems to be my less than 'nice' day. But that's another story!!!!!!!!!!!!
I have been a member of this group only a short period of time, but in light of the admonitions that caregivers die before the AD patients as a rule, we never hear of any of "US" dying. I believe there is a reason for this. Thanks to Joan, we have The Alzheimer's Spouse web site that never fails to get us through the worst of the worst...and is like a huge pressure relief valve. We cry together, of course, but we laugh together almost as often. At the absolute rediculous that no one else would "get". We have incredible parties together (such as the recent Clam Bake in Maine that Marsh forgot about), and we enjoy Happy Hours together.
Joan, do you know of a caregiver we have lost?......... This site is a life line!
Yes, Nancy - good question. However, how would we know? There are many who have faded away, or just were here for a short time and never returned. We don't know what happened to them. There is no way of finding out. They didn't leave an e-mail address.
I guess Carosi could make a list of names and the last time they checked in (boy, am I presumptuous, Carosi!- sorry!!) and we could see if anyone knows anything about their present situations.
i agree mary. i was surfing thru the initial posts when joan started up the site. there are tons of members that never are here anymore. shame they just dropped off. as a courtesy to other members if you are still here and only reading maybe you could email joan or just add a ditto or such to let everyone who worries know you are ok...just a thought. divvi
ok then email Mary yall!! haha. well she did put the email out there...as contact! or nancy B she started this and both yall have your eaddies out there...snort, snort...:)
Why is this particular subject a bit 'chilling! Most of us have reached the "Acceptance" stage when it comes to our LO's, but talking about us is an entirely different subject.... Waaaay different. I don't have a death list like Bluedaze.
As an aside, I was thinking that almost 70 (or more now) people have dropped notes to Diana (New Realm). That's an outstanding number of individuals...and would fill the secondary chapel at our church had they been there in person.
Mary--Have you any idea how many posts on all the threads, and then click to check profiles? I've only just started getting the Memorials by scanning titles of Threads. Still have to go through more thoroughly. And when you get to the profiles, a lot have nothing about their LO there--just site name, when joined, when accessed, posted, ... What bits and pieces I have are from the postings I have read that specifically announced a loss, but again, not all the bits I'm looking for will be there. Plus, we do want the entry to be acceptable to the Caregiver.
Once I'm done with the Memorial data, maybe we can see about a "Where have you Gone?" list.
I think the people to be notified list is a good idea. I made one for my Mom and still missed a friend from long ago. I now need to go ahead and make one for myself. I have made Funeral arrangements for both my dh and myself but have not chosen a garmet because I can't decide on one. I have not giving this to my kids but have it on my computer under Lois Personal and in a file in my filing cabinet and they know where it is. I have already written obituaries. I think that is a good gift we can leave our survivors and make things easier for them. Also, many of them don't know some of our friends if our children live accross the country. p.s. I do not have this message board on my list but am going to add it.
The father of my daughter's best friend died yesterday. He was well known former lawman in the Houston area. She said the Houston paper was charging them $2800 to print the obit. I had no idea obits were that expensive. Think mine should read, ______________ (name) Gone Home!________date. if they are that expensive.
WOW. I would rethink that one, but perhaps they are well to do. I think a 5" insert is under $100. here. They used to print them for free, I thought. Since we are on the morbid subject (to some, including my kids), I made arrangements ahead of time for my Mom's flowers. Since the majority of my family are allergic to flowers, I chose a spray with mostly greenery with some white lily's inserted in it and 2 large ferns for either side of the ends of the casket. on pedistals. It made a lovely display and my daughter took the ferns home and still has them on her screen porch. We requested memorials to Hospice so there were few flowers. I plan to use the same idea for my dh except there is a Florist here who does a spray with real vegetables and fruits with greenery. I think that is appropriate for an avid gardener and he would love that.
Is your husband a master gardener. I was always interested in taking those courses....because I love playing in the dirt and gardening. Remember, I've already planted several dozen flats of petunias. I planted three nice tomato plants in 5 gallon containers and have a bunch of little green tomatoes already! We don't have room here for a real garden and I couldn't take care of it if I did, but I do so love fresh garden tomatoes. They taste entirely different from the grocery store tomatoes.
One of my favorite Summer salads is the Caprese' salad,...with big slices of garden tomatoes,stacked with slices of soft buffalo mozzarella cheese, fresh sweet basil and a drizzle of oilive oil across the top. Or, just tomatoes, vadallia onions, salt, pepper and fresh lime juice. mmmmmmm. Have to remind myself I only have about 6 little patio tomatoes now.
My husband is a Master Gardener. He loved the courses and is still able to put in the hours required. He's on one committee, and he answers the phone in the office. The person answering is supposed to be able to answer questions about gardening. He's still able to tell the person he'll call back, look up the answer, and then make the return call. Who knows how long that will last. I want to put a fence around our backyard with gates I can lock, so he can continue to work with his flowers, etc. as long as possible.