I'm one of the early ones too, and can't begin to say how helpful this site was for me. It's three years now since my husband died, cared for at home until the last month thanks to a great aide (remember Andrew?!). I've moved on with my life and check in here only occasionally but think of you all. Today's New York Times had an interesting article about doctors and dementia that you might want to look up. There is a lot more press about it, and a lot more reality in the media than there was ten years ago when I first started down this road. As Mary says, there IS an AFTER. FOCUS ON IT,
Heard about this particular thread so I tracked down my old password info and thought I would chime in. Stumbled onto this site sometime in the wee hours of insomnia in 2008 back when I was in the living hell that dementia brings. Lurked for a while and finally felt the need to post. Spent many hours here over the years until my husband died May 2012. The advice, support and love I found from the members at Joan's literally saved my life. While I don't visit the site anymore I have several wonderful lifetime friends I met here. After reading the posts of several others I can only echo what they have said. Believe there is an after, keep that in sight, take better care of yourself and dig through the old threads until you find the help and information you need. Believe me, if the answers have been written anywhere it will be on this site that Joan started all those years and tears ago. Love, hugs and lots of rope to you all.
I just have to join in all this phun....yeah I am coming out of retirement...This site continues to be the sole support one can phind when dealing with alz...When I think of all the support I received from so many members here, I know that I would not have made it without them. I have made phriends with probably (prolly for Weejun) 30 people here, and I was phortunate to meet so many of them....Their encouragement kept me sane (depends on who you ask), and I became a survivor. The only thing I phind missing is the humor...no one seems to post anything phunny anymore....How can we forget Stuntgirl?? Or SusanB, with the heart of gold...etc etc, or the cruise ship that sailed from Phunafuti?? yeah, that phunny stuff made me smile and phor a bit, I was able to phind some rephuge phrom the disease.... Today, I can phace liphe again, and phound a new direction.... and yes, I am getting married on May 24th to the most wonderful woman on the planet......
I was one of the early ones to this site also. Joan has literally kept many of us sane and alive over the years. My husband has been gone over 4 years now and I have continued going forward from that time on. I had grieved for years while he was going through his torment and by the time of his death, I felt like a prisoner let out of jail. We had over 50 wonderful years together, getting married at 17 and 19, worked side by side in our small businesses from that time forward 24/7 - we were soul mates. But, death is final and life is life. I still delight in just getting in my car and going someplace, even if just through Mc drive through for a tea or coffee. I also have several personal friends that I gathered together, from this site, over 6 years ago. We talk daily by email, visit each other, travel together, laugh and cry together.
Phranque was also important in my life too. He suffered more than a lot of us with his wife but with the help of us on this site and personal sacrifice, he survived and is moving forward with a wonderful wedding this month. Congratulations Phranque...be happy..
7 months ago I met a wonderful widowed Gentleman through a friend of both of us and we have become soul mates. Neither of us is interested in Marriage - he has his home and I have my home. But, we see each other almost every day and are amazed at how similar our lives and desires are. He says we are "twins with different mother's". At our ages, in our 70's, we cherish having our own personal space at times. I have invaded his vacation camper home, though, and turned his man-cave a bit upside down. He has discovered his drawers and kitchen cabinets rearranged and cannot understand why I would put all the rubber bands, clips, batteries, etc, in small plastic bags. (grin) But, he takes it all in stride and it is wonderful to be experiencing a newly-wed type time in our golden years.
Keep on, keeping on, there is life after...but you have to keep a open mind and release the past and look forward, not back.
As soon as I heard about Joan’s board I joined in 2007; four years AFTER my DH had died. When I was in the throes of all this, the words from an old song kept coming back to me, ‘What’ll I do when you are far away…..?’ Decades of marriage, childhood sweethearts, how would I do it, what would I do? But you do, you will, I assure you. The pain WILL lessen. Sometimes you have to let things just happen, and sometimes you have to be proactive. But you know yourself, better than anyone else, professional or otherwise- trust yourself.
‘AFTER’ is just a different way of life, like moving to a new country, you get used to the language and new routines—and, yeah, you don’t want to. I remember screaming in the wind, ‘Just give me back my life!’ But we don’t always get what we want.
As for me, I’ve had a gentleman friend for years, but there will be no marriage, no living together, we each have our own lives and, yes, it’s not for everyone. I knew I’d stay in my own home, I like that my DH’s essence is still here, I don’t want to lose those memories. I do Tai Chi and other stuff, but still have too much free time.
It’s true tho, what doesn’t kill you makes you stronger and, now, selfish as it sounds—it’s just me and I am protecting myself, avoiding conflicts and negative people. I’ve learned to politely say ‘no’ and ‘no, thank you.’
As a young bride, I had every confidence that we would live to be very old together and that’s how I lived my life. It turned out not to be. John Lennon said, “Life is what happens while you are making other plans.”
How good it is to know the people who were here when I came to this site in 2009 are doing so well getting on with their lives. Phranque, it was such a pleasure to read your comments, especially in the beginning of my journey with dementia. Your sense of humor made me laugh on days when I wanted to scream. I'm so happy for you. If anyone deserves to be happy, you do.
To all the others who were here then, and the ones who are still here, I thank you. You helped me in more ways than you can imagine. I have tears in my eyes thinking of how alone I felt at that time. When I found Joan's site, by accident I might add, it was like a light shining down on me. It made me feel so good to know I had someplace to go to read about how other people were handling such a terrible situation. All the good advice I had gotten came from here, not from his doctors or social workers or support groups I tried. I thank you again.
phranque - do you have a Facebook page or a blog site? Would love to follow your take on the life you now have. The words and humor you have to describe life around you.
Jazzy, I share some of your experiences. My husband has advanced stage of FTD, is in NH, needs total care. He has Parkinsons symptoms as well. Our community is a very nice one but WAY out in the country. My husband was diagnosed in 1988, so we have had a long time to prepare and educate ourselves.. Most of the staff have obtained their training close by and have only worked in this facility. So I get a lot of blank looks. I was asked what did I mean by saying he "decompensated". They have an Alzheimers group, also some do not want to take steps that are needed and available. Just want to talk about the good ole days and the government. There is no Alzheimer Association in this area. I am going to look into what it would involve to start one if I volunteered. I am not suggesting that I am that smart, but maybe others could come on board. I am sure there is a need. Let me know what you do. I also use all of the AD and FTD sites I can for support. Thank God for this one!
Pavane so sorry you have to hear this saddening news so far into the disease. it does appear some of our spouses have inhibitions that started early and led them into difficult scenarios along the way we didn't have a clue about. there are many topics here about how our spouses turned to outside sexual conducts and how much problems it caused. please be easy on yourself. but i guess you have every right to feel as you do and act accordingly as to how you want to continue. there is no right way to handle all the things with this disease. i did find a short thread about what you are referring. divvi