You are a very handsome couple! Congratulations and do what you need to do! YOU need the protection marriage affords as well as him... Next step is all the powers of attorney and medical directives so you can do what he wants to have done.... I'm so happy for you! What a great memory you are creating! Post pictures!
We are planing to get married in October 14 at noon. He is very attached to me, and that has been a problem for his brother who wanted to be his guardian three months ago; and now my family just can't stand the fact that I am so dedicadet to him. I do have some friends who are very supportive to us. My daughter who just graduated as a nurse, she is very worry about me. I just hoping that he will keep remembering me and be affectionated. In my heart I know I am doing the right thing to do by caring so much for him, and God will provide whatever we need. So far we are doing acupunture every week and taking lost of suplements, and minerals; and eating healthy.
Hello! Yes, my husband has Language Varient FTD, as well as ALS. Short answer is, yes, he recognizes me! As a matter of fact, he is emotionally very yied to me and went through a period Where he got very fearful if I wasn't by his side, even is he was with his family. My husband hasn't been able to speak in almost a year (so our arguements are few!) and his mobility is just now starting to show signs of decline.
I'm glad you're asking questions. Please let me know if you have more!
I don't know if you ahve enough posts yet to create an album, but this is what you do: Go to User CP in the dark blue bar near the top of the page. Select that and scroll down til you see Networking highlighted in medium blue. Under that select Pictures and Albums. You will receive instructions for uploading pics. Be aware that you will need to downsize the pics into something the web site can handle. Use a program on your computer to do so. In the meantime post some more on the forum so you can get private msg privileges. Take care.
It is very painful to see him in decline little by little, this is horrible for him and for me that I have to witness his decline, and he is relying on me for his care. I feel a tremendous sense of responsability, love, and dedication to him. I question my self: what are you getting out of this dedication? It seems that it will be easy to walk away from him, but it is not for me, I feel in peace when I am with him than I am alone or with my daughter who is in college, very busy with her life. I love my kids, but he needs me more, I feel it is my duty as a human being to be with him until the end, and of course as for help because I can't do everything myself. Thanks to our friends, we are building a support system.
yeah his siblings are hovering and you as a caregiver and not a wife will come away with nothing it sounds like. So sad, you were building a future together, not his fault he got ALS. Glad your kids are grown and little ones won't get pulled in. If not living together, you are doing the best you can. Hope his family is going to step to the plate to help out. I can understand your guilt. I am a wife and feel tremendous guilt. Don't know why. I, like brooksea pray you can make the right decisions. Stay in touch. Pam
You are treading in deep water and you know it. I pray you will make the right decision. He has family. You have family. Which is more important to you? Your children, grown children, have instincts. Use yours. You cannot save the world. And by the way, you WILL be alone in it. I know I sound harsh, but I think you know what to do deep down inside. Don't ruin the rest of your life or especially your children's. If his own family is hovering like vultures, that should give you a clue. An ALS patient is a 24/7 job. I'm not kidding. I wish you had more posts so I could private message you.
You are responding to people on your own page( a commron mistake). To reply to them, click on there user name in blue. You wiill them be able to write on there page. I just came here to tell you to ignore post #4 on your thread. We sometimes get whackos on here, and our 2 moderators recently died. And one person is doing all the weeding out of the spammers, and he is not available to monitor this site 24/7
Thank you Pam!
I need to clarify that we don't live together, he lives in his own house. We started dating 3 years ago and he proposed to me on December 2011 when we were searching for his medical condition. I thought he will get better and then we can set the date to get married. My kids are in college, one (27)lives 5 hours away and he doesn't agree with my involvement. My daughter (24 years old) lives with me, supports me and feels sorry for him but she doesn't want to deal with him in any way. He has been very nice to me, a good companion and a great listener, and I feel bad and guilty. He just signed the living will and with tears in his eyes said to me to take care of him. I stay with him three days a week, and he is very cooperative to me. But when he is alone, I am worry. He has a sister who lives in seattle and a brother who lives in vermont. They were very agressive in order to get the documents and started making pieces of his assets, but he didn't sign anything.