I've found that in signing up for websites and searching the web for various resources to navigate this new care-giving experience there are many organizations. I have been surprised by the number of opinion based studies and thrilled with the fact that companies want to understand our experience in effort to improve our situation. I'm passing along a study I just participated in and I believe I read they are hosting one in both Atlanta and Orlando. The money comes in handy. Does anyone else have other opportunities along these lines to share? Thank you so much! https://www.surveymonkey.com/r/Memory_Loss_Alz
Is this how new folks are welcomed? I saw that others were helping one another and wanted to do the same. 2016 is the year my husband and I are married for 30 years and it is significant to me...i.e. the 16. I'm not comfortable on forums and trying to find my way around and thought this would be a good way to start. I guess maybe not. How is someone supposed to feel welcome? I feel even more alone now.
As you yourself know then, care givers are under great strain and in our experience here there are at times people that sign on and suggest we go and participate in something which often turns out to be some sort of scam.
You're welcome here and once again, I apologize for my rudeness.
alz sorry about the questioning. We have problems at times of people posting about studies where that is their only post. Many turn out to not be a spouse. Like as we age we have to be aware of scams - we do too.
Congrats on the 30 years. I hope you give us another chance. When you are ready please introduce yourself. I have info about me when you click on my name but probably most, especially ones that have joined us the last 4 years do not put info there, so we rely on you posting it here. There is a "stickie" thread at the top of the page intro yourself or you can start a new one or add it to this one.
From Google, using the website given: "Treatment Diaries is seeking the patient and caregiver perspective for our partner Schlesinger Associates, a market research company that has been in business for 50 years. Schlesinger is conducting an important study on Memory Loss. If you qualify and participate, patients and caregivers will be compensated $150 + $50 for travel for an in-person 60-90 minute interview at our Atlanta or Orlando office. Everyone remains anonymous and all privacy is protected." I, personally, would not want to take my demenita-husband on such a trip, even if the trip were paid for, or if I received an honorarium. I have participated in one survey endorsed by Joan, and it was conducted by several long-distance phone calls. The interviewer was a Phd candidate at a well-respected university. A small honorarium was offered, which I refused. If I remember correctly, some of the results were shared with us. Joan kept us informed along the way. We have had a couple of postings lately naming a certain care facility and asking if we had heard about them and what they charged. Identical postings were on a teacher's website in the UK and received complaints. Yes, we have had people misuse this site, and yes, all of us are tired and spun-out. I apologize to you, Wolf, for involving you. You are obviously more gracious than I am. Alzheimer 16, if you want to share your story with us and ways of coping, you are more than welcome.
Thanks for the responses. The ironic thing is I learned about thealzheimerspouse from a sweet friend on TreatmentDiaries and she encouraged me to come here. I've had my own chronic illnesses and have been sharing there for over five years and now I find myself in a new role and I am new to this world. I'm still trying to figure out what I don't know, to learn from others, share and be apart of the conversation. As a side, the interview was for me and not my spouse and the money allowed me to pay a bill that was late. I know there are things for patients too but it is certainly nice to be invited to share my side of the experience. I feel a little left out in this illness while doing a good deal of the work. I hope to make some friends here and I'll continue to poke around and try and figure this out. I am a good person and very caring and loving...always tying to help out. Have a day and hug your loved one <3
Hi, alzcaregiver, and welcome. I hope you find this site to be as helpful as I have. I signed on 2½ years ago and have been reading and posting on it ever since. It sounds like your husband was recently diagnosed. That's a hard think to go through for both of you.
To others, I suggest that if one of us thinks a post is a solicitation or otherwise not genuine, we send an email to joan about it, since she is the moderator and knows how to handle these things. Her email address is on the Home page.
Myrtle, I sent an email to Joan on Oct. 21 about another matter, and she did not reply. Since my experience has been that she always acknowledges emails, I concluded that she was very busy, or away. Or, again, maybe I had the wrong email address (joan@thealzheimerspouse.com). I don't see her email address on the home page of the new site. Perhaps you would be so kind as to find it for me and let me know. Thanks.
mary75*, My comment was not directed at you specifically. It was a suggestion for all of us. That's the same address that I have for her. I thought it was on the webpage but you're right. It's not.
Thanks. Myrtle. I took your comment as general, as a help for everyone. My email seemed to go through all right, so my best guess was that Joan was busy. My understanding is that Joan has, or has had in the past, someone reading the postings to head off any problems. I don't know if this is still in operation. In any case, I appreciate the time and effort you took to help.
My sincerest apologies for not responding to emails. Yes, I have been busy, but that is not the reason for me neglecting my emails. Honestly, I am having a very difficult time being in the Alzheimer world. When I try to write about my widow's journey, I experience what I can only describe as PTSD. I just can't go there. It's too much for me to deal with.
I have been distancing myself from the Alzheimer World by keeping busy with unrelated activities and day trips.
I feel that I owe it to all of my wonderful loyal members to continue to write and be involved, but I have been unable to do so.
It is my hope to write a blog or two about all of this before I leave for my annual Thanksgiving trip to Chicago.
In the meantime, I will check my email tomorrow and try to catch up.
I am still struggling desperately with grief, and finding out that time does NOT heal the grief of losing a beloved spouse. Sometimes it makes it worse. At other times, I just try to live a life without Sid in it.
My heartfelt apologies to all of you for my neglect.
I can't accept. You're easily just as important as anyone else.
I noticed you must be feeling like this by your absence and it's very important that at this fragile time you understand that any support available here in your house applies to you just as much. Try not to worry and instead distance and protect yourself as you need to. I hope that you can start healing soon and that your Chicago Thanksgiving is a good one.
Maybe Joan could have a thread where you post what activities you are doing to enable you to go on. They don't have to be emotional or deep, just communicate. You don't have to read any other post.
I totally understand where it can be hard to stay in the AD world - I don't plan to when this is over at least not until after a break. I can also see you may never be able to or be as involved as you thought you could continue to be.
Joan, maybe administration of the board could be turned over to someone else to keep it going & help you get a break to decide if you want to turn it over permanently. Moderators could be temporary or maybe later members could share some moderating ability. (Recent email questions had to do with a solicitation that needed to be taken down from a possible fraud site & is still there - not this thread, another, and probably questions about the study on this thread too). This board has been a lifeline since I came here in '08, and I am sure the need for it only grows. I think it lost some readership when google was deterring people with false messages, and then a lot of members lost spouses. Those of us still here need it, as will those just finding it. You need to do whatever is necessary to take care of yourself. I hope you get support for your process, and I hope this board continues.
And Alzcaregiver 16, no that is not how we usually greet new members here. But people are wary of sites that post as people. I have been with my partner 31 years. He was diagnosed in '07 with early onset, which was subtle for 2-3 years prior. He was 58, and I was 54. Now I am 66, and he is in a LTC facility. When I first came here, I started searching subjects as they came up in older posts, then just started reading the board from the beginning. It covered about everything that I ran into along the way, so I think as awful as the past 10 years have been, I found useful tools to help me deal with and understand what was happening to him and me. I hope you find solace here too.
Marposa I think you are right in your post. Maybe we need to move away from the dementia world in order to heal. My DH has been in LTC for over three years now and I have tried so hard to find a support group where I can fit in and express myself but it just doesn't work. I really don't want to share this world I live in now. I want to try to find a world where there is no LTC, no dementia. I'm trying but I just don't have the get up and go yet, but it will come.
Joan you have given so much and shared so much with this site and maybe you need to move away and let it be cared for by another. It's a thought. Have a lovely thanksgiving.
Jazzy I feel the same way I am trying desperately to move on into a new world but as we all know not easy. I realized the other day this means I have to stop living in the Alzheimers world. But how? I see such changes in Lisa visiting is very hard I just want to run away. She has only been in care 3 and a half months, now adjusted well but I am struggling. Yes I am getting out yes I am meeting people but I still feel stuck. Going out with people who are making small talk, having fun, I use to be fun, I don't feel that way now. What happened to me? I am going to visit for a couple of hours about 4 times a week. I am Lisa's comfort zone when I am not there she wonders around looking for me I need to be there for her but I want to get out of this living in limbo. I feel like I just want to get away from it all for awhile. Jazzy I know it will come I am trying and I will make it happen as you will it is just such a struggle.
Rona - it's only been 3 1/2 months since you placed your wife. Give yourself some time to heal. Now after placing hubby 3 years ago I'm finally feeling "normal". But when I go visit him it takes me right back down, then I'm struggling to get back up again. Because he doesn't know me any more I go once a week and stay for about an hour.
That's enough.
When I go away for months sailing I don't feel guilty about it. The nursing home can reach me if anything happens. I still have a life to live.
Be kind to yourself. Slowly figure out what your new life will be. Then make a plan and go for it. And for god's sake don't stay stuck here in limbo. Looking back you will regret it. A whole new blank canvas is in front of you...what do you want it to look like?
Rona, I might be in the same boat you are. My wife moved into assisted living at the end of June. She's doing well there, and I visit almost every other day, about three times a week. It's been a few months, but I'm still trying to find my balance.
I go out with friends and colleagues for lunch; sometimes I go out on my own in the evenings. I don't really have a coherent social life--for decades my wife and I would do things together, sometimes with other couples and sometimes on our own, but that went away several years ago when she got sick. I'm rarely up to being a third wheel with our old friends, and I tend to avoid some places when I go out on my own. They bring back memories of times when my wife was healthy, which make me sad now, or they bring back memories of the past few years, after my wife's dementia came on, and those memories make me sad, too. So I go to new places, try to meet new people, try to re-invent myself a little. It's not easy.
Jazzy, I wasn't suggesting those with partners move away from the Alzheimer world to heal. Joan was saying she was having PSTD with these issues now that her husband has passed and she is dealing with the grief of that. I need support for the ongoing issues that my partner's care entails, and that world isn't going away anytime soon. And this is where many of us came or come for it. I am hoping for this board to find a way to continue if Joan is overwhelmed by it.
mariposa this place will be here because we will still need each other. For many this is all we have. Yes, it has changed with Joan not active since Sid died - she has tried but her grief is deep and the path out is what she is trying to find. Personally I can't imagine it because my marriage is not like her's was. We are not soulmates like her, Nikki and others were blessed to have. If her future is to just provide this place for us having others moderate, I am fine with that.I know she thought she would always be here, but we all know things change when reality hits.
Mariposa, I have always had a special spot in my heart for you since the very early days when we were both faced with tremendous challenges and so many of the good people held us up while we literally struggled to stay afloat to breathe. I think of Divvi, Sunshyne, Starling, Bluedaze, Nancy B and so very many more. I did a search last night and reread many of your 2000-plus posts dating back to 2009, and my 3000-plus posts dating back to 2008. Your wish to keep the site going for those in need and your suggestions are similar to mine when I see the site misused. If you ever want my email to keep in touch, I'll be glad to post it for you.
What Charlotte wrote, "For many this is all we have," really touched me and highlighted the importance of this site and especially of the message boards. Joan's blogs are always insightful and welcome but it is the message boards that create a practical lifeline for so many of us and alleviate some of our loneliness. I would hate to see them disappear. For all you who rarely post, may I suggest that you chime in a little more; your unique viewpoints would be very welcome to me, at least, and I think also to others.
Joan, what you created in these boards is something that is much more than the simple sum of its parts. The synergy of this forum seems to have made it a self-sustaining system, even when you are not able to fully involve yourself in moderating it. Please let us know what we can offer in the way of non-financial help, whether just to get you over this rough patch or in the long term. (As for finances, I've posted a message on the "sticky" thread called, "Requesting Help for the Alzheimer's Spouse Website.")
Thank you everyone for your support and understanding. There is so much in my heart and head that I want to write, but I haven't been able to sit myself down and write it. Maybe after my Thanksgiving trip, I will feel more energized. My 5 great nieces and nephews are such a joy to be with. (And ANOTHER on the way, I might add!)
Mary75* - I checked my email, and there was nothing from you. Please try and resend. The address is the same - joan@thealzheimerspouse.com
Joan, as requested, I've forwarded the email I sent on the 21st, and to the same address. On my side, it looks like the one I sent on the 21st went though. Have you checked your trash and spam? Sometimes incoming mail to me ends up there for no good reason that I can see.
Joan, keep in mind that during one difficult time doing these things and writing gave you energy. Down the road it might do so again. Keep windows open and during this time concentrate on taking care of yourself.
Jazzy, Rona, Amber. And others with spouse in long term care! It has been a year since I placed my DH, and in many ways I am still under the ALZ fog. I go every day for an hour or two. I just feel the need to see that he is treated as well as possible. You must be vigilant! I still feel much responsibility. He has no voice anymore! That said he m trying to rebuild my life. I go wen I can! I'm trying to make new relationships! Fulfill old dreams! Live life to fullest! It isn't easy but Im so much improved from a year ago! It's been a very hard year, my worst ever! Emotionally draining!
It's always good to see your posts, Dee. You've been posting for a long time. Are you still in Kentucky? Are you still nursing? What are you reading or watching these days? Let us know how you are coping. It's not easy at times, I know, but you will make it. You Southern girls seem to have what it takes.
Mary75 I am fairly new at posting here. Only about 7 years into the process. Sometimes "struggling to stay afloat and breathe". Literaly sometimes struggling to breathe. I search for different topics as they come up. I feel like I know you and Divvi and Bluedaze. Here I am in 2016 reading how you all dealt with these issues back in 2008 or something. Thank heavens for the search function! And thank you for all those posts.
Mary75. thank you for your kind offer to email. I think you may have confused me with someone else though, as I am not a prolific poster. Everyone's posts have been a wealth of knowledge and support.
Yes I'm still in Kentucky! I have lived here about 50 yrs now. I gave up my job in 2009 to care for my husband. And have no plans to go back to nursing or any other job. I stay busy with going to nursing home and helping my daughter with my sweet grandson who has Down Syndrome! He has been diabetic since age 1, has Vision problems and had a left hip replaced. Two yrs ago. And will prob have other one done in the next couple years s. But he is such a sweetheart, and stays very busy! He and my husband were so close, he just can't understand what's happening! It's hard for us all to understand, right? Can I get an amen! God Bless each of you!