I saw this online - a woman taking care of her Alzheimer spouse posted a conversation with him pleading for his friends to just come visit. I don't have the courage to post it on my face book page and wish I did. So many of my partner's nearest dearest friends dropped out. I don't think people not dealing with it can fathom the isolation of this disease. I understand why my partner wanted to keep his illness secret the first two years after diagnosis. I tried to honor that until it became a liability not to, except to my closest friends. His friends would always ask how he was if I ran into them (while looking for an escape route, because it just made them uncomfortable if I told them). They never asked how I was doing. I would say, come visit him. (A wife of one of his friends told me how her husband "cries" every time he thinks on mine. But never could get up whatever it would take to visit). Three of his dearest friends vanished with knowledge of the diagnosis, and one faithful one visits every week. Anyway, this post got quite a lot of media attention, which I welcome.
Alzheimer's Patients makes a tearful video asking friends to come and visit him http://www.alzheimersreadingroom.com/2016/01/lifestyle-health-alzheimers-patients-makes-tearful-video.html
I really envy the ones who have a loving supportive family and friends. I think many of us would love to have our friends and family around to help and just give is a hug. No one ever, not even family, ask me how I am doing. The Alzheimer's Societies, I think they should change their name to Dementia Society, are trying to educate the public and get rid of the stigma. I don't know if they can change people's idea about dementia, but I hope they can. It gets pretty lonesome in this world of ours. I'm hoping that many of our community who have lost a loved one, that used to be here so often, not just to vent but to support others, are building lives after dementia, but I sure miss their input. To those who have lost their loved one and help us, thanks for sharing your expertise.
Heartbreaking. I think that Beam (the man in the video) is correct that his friends are afraid of him. They are probably also afraid of the unknown and of being uncomfortable or embarrassed. You often see this discomfort when people are called upon to talk with deaf people (who have learned to speak out loud) or people with foreign accents. I think this video is great because it reduces the fear of the unknown; it shows Beam's friends what he is like and how they might communicate with him.
I think anything we can do to let friends and family know what our spouses are like is good. My husband's family turned out in force for a funeral recently and I overheard a far-away relative ask a local relative how my husband was doing. "Not well," said my sister-in-law, in a grim tone. I jumped up and interrupted, saying that he was actually doing quite well, that he was happy in LTC and had friends there. At the luncheon later, I sat with a nephew and some of his nieces from the other end of the state. They asked the same question and I answered the same way. One said, "But isn't he bedridden?" and I explained that he was not; he walked without assistance and participated in simplified games like bowling and bass toss. When I showed a picture of him on my cell phone they were astonished that he still looks like himself. They then started telling stories about when they worked in his print shop during their summer vacations. When we said goodbye, several of them said, "Give him a kiss for me, even though we know he does not remember me." I realized that our conversation had humanized my husband in their eyes. Maybe this the first step.