My person that I love was diagnosed in 2017 with Lewybodies Dementia. We lived together. He is 73 and I am 71. I made certain he ate nutritious saw doctors regularly, exercised and socialized. We were very happy together , he told me often. two years ago his 3 adult daughters saw a decline in his Dementia and made unreasonable demands on me , put a bracelet on him with their names and numbers for contact, gps and monitored our everyday lives. This became overwhelming and I had a meltdown asking the daughters to take him, they took him, blocked my number on his phone and kept him from me .. until he was able to express his want and need to be with me. We love each other, He was returned to me and we spent our usual winter at his house in Florida. He was happy and entered senior olympics. We were there from December 30,2023 until May 21,2024. When we returned his daughters were busy with their lives and could not help with ours. He left 3 times calling his daughters bc they did not call or visit him and he would start an argument so he could see them…DEMENTIA. Most recent was his youngest daughter’s 2nd wedding August 2, 2024 I was left alone and not acknowledged as part of the family, no pictures .. shooed away and left alone in a separate room. I quietly told my person to stay with family and come home to me after the wedding. I ended up staying after confronting family of the situation. I was again left alone in a separate room. I drove home and asked my person with dementia why I was left alone and asked for the next week ? He called his daughters bc, she scolded him for not leaving me 5 years ago..and they left. My phone number was blocked on his phone and no one would answer my calls. I had to search to try find out how to unblock the block, which I did . I called him and he was very happy to hear from me asking me where I’ve been, telling me he missed and loved me and asking to visit him at a nursing home. He left 8-11-24, call was 11-15-24. His phone number was changed the following g day . I then received a video ,12/4/24 from him of him in a nursing home with the name of the place , address and phone number. He sent the video. The nursing home would not let me see me bc the daughters said so. I called the ombudsman and s month later 1/7/2025 visited with him . He and I were so very happy , we told each other how much we missed and loved each other , had lunch together , and walked the halls. Visit was for 4 hours, at the end his youngest daughter (44 yrs old) called him screaming hysterically, “She’s BAD !!! SHE’S BAD!!! SHE’S BAD , Dad what are you doing!!! she’s bad!!!! He was so shaken snd trembling he passed me the phone. I was forced to tell her and hi. I visit again, but I did 3 more times over the next 3 weeks , I brought his favorite meals each time and each time he began rejecting me, the last visit 1/30/25 he told me that he met someone and did not want to see me anymore. He said he cut up my pictures so he would forget me? I told him he would not forget me bc I am in his heart, The memory Care Director said we had good visits and got along good. I have stayed away as we agreed together with the Director but would have a final visit in May. It is now June and I want to see him. His daughters and staff will not tell me how he is, I miss him and love him and cannot forget him . We were together 14 years 24/7. Please help. Thank you.
My takeaway is that anyone who is reading this, please consider what you're doing to yourself when you are caregiver for a loved one to whom you are not married! OP was for all intents and purposes an unpaid nurse. Sure, marriage is not for everyone or good in every situation, but caregiving isn't either. Protect yourself. Always.
The legal documents that would have been protection against something like this happening with aging were not done, don't exist; so this is now in the hands of the family.
I am so sorry.
Your "person" as you call the man you love, has a permanently broken brain and can no longer make any rational decisions for himself. And sadly he may not even remember who you are and that he once loved you.
That is a hard pill to swallow I'm sure, but it's now probably best that you just move on with your life remembering the good times that the two of you had over the years, and take comfort in the fact that he is being well taken care of.
Lewy Body dementia is the second most aggressive of all the dementias with a life expectancy of just 5-7 years, so that the fact that that he is still here is surprising, and means that he is well into this horrific disease and that his time here on this earth is very limited.
In many ways you have already lost the man you loved years ago, so now it's time to start the grieving process. Please seek out some grief counseling if needed.
You're going to be ok. It will just take some time, so be good to yourself.
God bless you.
Thank you for your thoughtful answer. For some reason I keep thinking that he remember our living relationship and has a moment of lucidity where he ask someone to contact me to visit him. I k ow this may not be likely bc he totally loves his daughters most and they told him that I was bad for him. I pray for him and them. I just sorry that I can’t know how he is and have to search social media to find glimpses of him.., I agree that he needs peace and love but feel as though our connection was real.. souk mate. Everyday he would tell me how happy he was to be with .., 6 years after diagnosis with LBD, family.. daughters want to believe we fought all the time, we made love more than 3 week… ate all meals together , socialized together .. played pickleball or walked 6 miles daily together ..
I cannot accept that it is he that chose not to see me and believe this is elder abuse to him and me?
I cry daily , I pray daily, I see a psychiatrist, attend dementia support groups and starting therapy this week.
it is unconscionable for me to process why I cannot know how he is when strangers care for him and know??
I am forced to harass family to let me know and I am afraid to continue.. Within the past 2 years they would respond after numerous texts and an 8 page type written apology letter. It it had now been since January 30, 2025 that I have not seen or heard about him. Recently I found a social instagram if him at his grandsons final lacrosse game … this enraged me and I text asking to see him . The Director of Thr place tells me I could visit if he is amenable to my visiting??? I think he has been brainwashed not to accept my visit. I am so very heartbroken and don’t know what to di???
thank you for listening
Gratefully