To answer the question about caregiver deaths (i.e. - US), no - there is no way I would know unless a relative e-mailed me. However, I do know from the e-mails I have received that these are the main reasons people stop writing on the message boards:
1.Spouse dies and they are trying to move on with their life. This is a common theme in the e-mails, and completely understandable.
2.Spouse dies and it is too painful to read the site - one woman told me that she was no longer a wife, and no longer a caregiver. She was trying to find out who she was, and did not want to be reminded of the Alzheimer journey. She asked that I remove her name from my e-mail addresses, and I did.
3.The caregiver spouse needs a break from AD all day all the time. They come back and lurk and write occassionally. They are trying to have a life outside of AD. Many e-mails have echoed this sentiment.
4.Much too busy with caregiving to spend time on the computer. I have received e-mails about this also.
5.And finally - maybe they are just not getting what they need from this site. I have not received any e-mails of anyone telling me this, but it seems to be a good guess.
OOPS...Sorry Joan, we got off the subject. I will start a new thread called gardening and maybe you other garden posters can move yours over to it. Lois
I also apologize for getting off the subject, I'm as much to blame as lmohr., ... just like real conversations, we tend to meander from subject to subject. Sorreeeeee. Back to thoughts about proper memorials. I don't agree with your Number FIVE Joan... that would be impossible. I can understand wanting to stop living, breathing, eating and sleeping with AD....and then spending time on line talking about it. For me, it helps. When it gets to me, I play Blackjack, very poorly, but it's all pretend money on line. (I hope!)...
I would believe more than anything that if a caregiver got sick or a LO was placed in a care facility in a final stage, that would account for some absences.
Yes - most newspapers now charge for any type of obituary. Some only print them on one day of the week. The only thing the papers around her print for free is the death notice itself. Stinks!! But, they are having financial problems too.
I don't know if it would be used, but the thought of a section for those after AD might be an idea. Right now there is just general. Would those who have lost their LO be interested in a totally different section for you? A sort of place for support while you work on grieving and making a new future? Just a thought.
Update on progress-- First apologies to Nikkki and Therrja--you can get loopy scanning the pages and threads. Initial scan of 64 pages has turned up 17 inclusive of the 2 joang already has. Counting those 2 there are now 7 verified entries. The remaining are missing data or at least need an indication from the caregiver as to preference in listing name(s).
joang, I'm transcribing to a Document and will send as attachment. I don't have eaddies for verifications or completions. Further data can be added as gleaned. I will continue to look in more depth as I can, in case some are buried within threads and not easily picked up from thread titles.
NancyB and Carosi - Thank you ladies. I have been thinkingabout all of us who have reached the end of the journey, but did not want to ask any more of Joan. This wonderful site was my lifeline for the last year or so. Carosi,thank you for offering to collate all the info. I still read posts, probably every day or every other day. It is like I just can't stop. Here is my info:
I won't post my last name, but I am Patricia and my husband was Glenn. He was an automotive research engineer before retirement. In retrospect, he showed signs of this (unrecognized) perhaps as much as 20 years ago when I saw a complete personality change. It made for a lot of very rough years. In about 2000 I began to see some signs that did draw my attention and by 2002 I was definitely suspicious. Was not sure if it was TIA's or Alz. Testing ended up confirming both TIA's (which the doc did not feel was the real problem) trip to the neurologist confirmed ALZ. He died 12/20/08 at the age of 84.
On a personal note, at the time of his death I had just had a very overdue mamo done. Have spent 2-1/2 months doing all kinds of additional testing including MRI and biopsy. Finally have been declared cancer free. This was a bit scary as I have had breast cancer in both breasts before (twice on one side). But they are saying I am OK right now. I am still very tired from years of stress/caregiving. But I know I don't have to tell anyone here what that is like. I am trying to get my health/well being back on track. Mentally I am doing well (at least I think I am). I am getting on with life and trying to do things I have wanted to do for a long time. I live on a very large farm in an antebellum house. Am trying to get the house and farm ready for sale so that I can move to something a little less labor intensive. I am also planning multiple trips, the most exciting of which is the one I am leaving on the 26th (yes next week). I am of Irish descent and I am going to Ireland. My 29 year old son and his lady friend are going with me. I will go to see my best friend in Washington (state of) in April. I feel for all of you here even if I do not post often, I read and empathize. Joan is going to get a halo for her efforts and I know all of you will have wings when we finally meet somewhere besides cyberspace. Love to all patricia
SO glad to hear from you, Patricia, and that you're moving on. Our best wishes to you - have a lovely time in Ireland. Hmm.. Irish in an antebellum house... was your nickname Scarlett?
You are so welcome, Patricia...Remembering our loved ones is so important...it makes all we did more worthwhile. I cannot imagine him simply vanishing from memory when he dies.... and realizing that all my efforts would also be forgotten. Remembering them is validating us. Take care of yourself now. I was struck by something I read on this site earlier...that it is important to put the smile back into our eyes. I hope you can and will..
Joan, the reason you've not got any emails telling you that someone is not getting what they need from this site is because that's impossible. If you're an AD spouse, you WILL get what you need from this site.
The one that was put in the Ft Worth paper once with his picture cost $304. It was small incomparison with some that are posted. The same obit with picture that was posted in our weekly hometown paper only cost $35.00.!!!!!
Patricia, so glad to hear you are cancer free. I'm overdue for a mammogram also and need to make an appointment soon. Have a great trip. Both my g-grandparents came from Ireland and I would love to take a trip back there.
I'm still in the "numb" stage (been 3 weeks today), but I just try and keep telling myself "this too shall pass" and I will remember the good times we had in 38+ years.
Well, to answer why caregivers disappear, Joang has it right on the nail as far as I am concerned. I fit into the category of suddenly discovering the world again. The years that led up to the nursing home were 24/7 Andrea. I was at home, pretty much trapped. When she went into the home, it consumed my life to see that she was taken care of, and then she started declining, and that took up all my brain space. Now that she is gone, I have the ability to travel and go places, and be with the grandkids and I haven't had that kind of freedom for 8 years now. I still check in, but it's kind of like when you are friends with a bunch of single people, and then you have a child. Suddenly, you just don't have the time for the previous friends (notice I didn't say "old" friends!LOL).
You all are my friends with a child, and I lost my 'child'. So while we have lots in common, I have lost the thing that most brought us together. Mostly I just want to check in and see how everyone is doing, and think about what it was like to be there, and wait for you to come over to my side, hoping your journey is as kind to you as possible. I wouldn't say hurts me because of Andrea, but more that it hurts me to know how you are hurting, and how much there is left to go for you.
trisinger, thank you for your kind words. Thank you also for checking in with us. You are right, your life has moved to a different level. A better one. May you have peace and come back to add your comments. We want to learn from your experiences.....M
York-it is always good to hear from you. While you don't need us in the same way we who are following in your steps need your wisdom. Please enjoy your new wings.
Trisinger, seems the 'rebirth' thought goes both ways when we lose our spouse. they are released as well as the caregiver. nice thought. when you 'come over to my side' . i like that thought as well. glad you are doing well. divvi
I think the "Friends" essay is appropriate for this discussion. I do not know who wrote it, but it was sent to me, and I have used it in a blog:
"We can have friends for a reason, friends for a season, and friends for a lifetime.
I used to think that only lifetime friends were valuable. That the reason and season friends were not true friends. But now I think that God sends us all three kinds of friends, and that they are all equally valuable, and can all make lasting impressions on our lives.
When dementia of any kind enters our lives, we sometimes lose friends that we thought would be lifetime friends, or at least they drift away and aren't as connected. Then we may need to look around and find friends that may enter our lives only for a specific reason, or might be friends for just a season. I have new friends that I have very little in common with, except for dealing with dementia. There is a good chance that after we have dealt with dementia to the end, our friendship will end, because we will no longer have a common bond. That is ok. We were there for each other when we needed it the most. We may find friends that enter our lives for a specific reason - a piece of extraordinary advice, a referral to a valuable resource, companionship for a certain period of time. They may come into and go from our lives quickly, but their importance in our lives cannot be discounted."
I agree with Trisinger. After a bit of time I have accepted I am still alive. Most days now I totally enjoy what I am doing. After Hank died I took my name off the waiting list for an RV Park I particularly like. Now that I am spending time here again and find there are quite a few staying on after spouses have died (and some who dealth with AD) I realize this is a good spot for me to have a lot. This allows me to travel when I want and stay put when I want. I have a new life now that suits me well. Hey, I already found someone to kiss! I am caring for my grandson two days a week and he just learned to kiss on the lips. He isn't two yet, but he is getting lots of practice on his Grandmother and I am SO enjoying quality time with him.
Bernie, 74, (Bettyhere) Left peacefully July 27, 2003 Diagnosed with Short-term Memory Loss, 1993 Vague behaviors for decades AD CG, 10 years
People often ask why I remain part of the AD community, but I just feel a certain comfort hovering around the edges here. I've had 10 years of AD CG that only other AD participants can understand. Yes, I've moved on and I'm satisfied with my life today, but my current life & my past memories are not mutually exclusive.
I'm reading "Alzheimer's Surgery" now. Getting to know you even better. It arrived yesterday and I'm all the way to "Danger, Danger Will Robinson". Glad you still here. Also received "When the Doctor Says Alzheimer's.'
York, Fran and Betty - I appreciate your comments so much, and treasure the friendships that we have all developed here. We all understand that your lives have moved on,as they should and are glad that you are continuing to check in here and occasionally give us more help when something comes up. I am glad that you have been able to move on, and that you are developing new friendships and traveling (Fran's in California right now, Clare). I will be joining you within a year or so, probably, and I too will stay in touch with my friends I have made here. I think we all got close quickly due to our ability to share our experiences and look for ways and means of caring for our loved ones. I really feel sorry for those who are taking care of a spouse without Joan's site.
There is such wisdom and friendship and commeradary and understanding and togetherness in this group of us who live or have lived in the AD world. Joan, you had to be inspired by a higher being to have thought about this website and then to have the courage and ability to make it a reality. Words of thanks are not adequate for what you have given all of us but hopefully you feel the gratitute and love when you see and read the hundreds of inputs that post to this site everyday. You are truly an angel.
Wanted to bring this back upo top. I still need to connect with nanapapa IOWAWIFE barbarakay Northstar Nansea
Short of reading every post on every thread, I have 17 entries to start our memorial. I'll be forwarding them to joang after she's back. The 5 above are incomplete and not cleared with the spouse yet.
Please enter here or e-mail me at crlsimpson@yahoo.com Thank you. Carosi
I e-mailed Carosi about the Memorial and she told me that she thought it would be helpful to some folks if I posted my comment to her. So here it is, for what it's worth.
One thing that I have been going through, that I wasn’t expecting, is just missing the man he used to be SO much. I had lost sight of who he really was, while I was in the middle of the nightmare. When he first died, I was relieved, for him and for me, but now I remember him, as he was, so vividly, and miss that guy every day. It’s bittersweet, really. It hurts, but I’m glad I have the REAL Gary back, even if just in my memory.
I e-mailed Carosi about the Memorial and she told me that she thought it would be helpful to some folks if I posted my comment to her. So here it is, for what it's worth.
One thing that I have been going through, that I wasn’t expecting, is just missing the man he used to be SO much. I had lost sight of who he really was, while I was in the middle of the nightmare. When he first died, I was relieved, for him and for me, but now I remember him, as he was, so vividly, and miss that guy every day. It’s bittersweet, really. It hurts, but I’m glad I have the REAL Gary back, even if just in my memory.
beenthere, thank you for posting. I do think it will help some of the people here who say they've forgotten the person their LO was before. It helps to know the memories do come back. I could feel your hurt and sadness when I read your post. {{{{Hugs}}}}
beenthere That was very encouraging to me cause I seem to no longer have memories of my LW. Even if I look at her pictures, I don't really remember the personal side of her. I can't see her smilel, her talking, nothing. I am so thankful that maybe I will recover that after death, unless I go first.