It has been awhile since I have posted on this site. My husband Mark has been in the last stages of this disease and is in what I believe his last decline. He is on hospice care now. For at least a year now, I didn't think that he even knew I was visiting him. I couldn't get his attention and could not get any acknowledgement from him except rarely. About 6 weeks ago, I played the song we danced to at our wedding on my cell phone and placed it by his ear. After about 1 minute, he got the biggest smile on his face. I had not seen a smile that big since he was diagnosed with early moderate Alzheimer's in July 2008. A video I came across on Facebook helped me remember that they are there no matter how much we may think they aren't. I don't know if everyone can see this but if you can, please watch. You may be able to help your loved one connect if only for a moment or two. https://www.facebook.com/photo.php?v=10151579601073764&set=vb.112009273t814&type=2&theater
Diane, thank you for sharing this here with us. I watched this when you posted it on facebook and the tears sprang to my eyes.... now reading what you wrote about your interaction with Mark, the tears are present again. Very touching ((hugs))
When I was in perhaps my darkest time, when Lynn was unable to communicate, make eye contact, I came here in desperate need of support. You all reached out to me and I am forever grateful! But it was Carosi* who said something that helped me greatly and still resonates with me to this day.....
Aug 25th 2010 "I honestly believe our LOs are still "in there". The Dementias wreck the communications lines and eventually shut them down, entrapping our LOs, but they still know us, and respond to us. How else to explain the brief flashes of them we've seen reported so many times, even at the very end? You've seen this yourself, with Lynn. Nikki, Lynn is not, nor will he ever LEAVE you. He is and will always live in your heart. You will make it through this. You told us yourself. Your love will see to it. Love remains."
Almost 3 years later and those words still have the power to move me to tears. Mainly because at that moment in time I was breaking....I had been fighting so very hard, every single day, to get any response from Lynn. Desperate I would sit with him for hours trying to coax any sort of reaction from him. Carosi*'s post gave me the strength and the courage I needed to keep fighting.... to try for all I was worth to break Lynn free from at least some of the chains Alzheimer's held Lynn an unwilling hostage in.
A mere 4 months after this post is when I won the battle to get Lynn approved for Marinol. The miracle we were given is one I am forever eternally grateful for. I do know there is a possibility the effects will one day lessen, and there is a risk Lynn will once again be so lost to me.....But I will KNOW he is not lost, just temporarily unable to communicate to me the way I wish he would.
We need to reach out to them on THEIR level, reach out in ways that have meaning to THEM, do whatever we can to bring them joy. Human touch and music are magical!
Thank you for sharing this very moving video with us ♥♥♥
Geez, after reading your post, I needed the kleenex again! I've never cried so many tears than the last 4-1/2+ years since Mark was diagnosed. Lynn's situation is truly a miracle! Huggs <3<3<3
Yes that video was so so beautiful. Yes Nikki oh yes there is NO believing on my part, when people say, well he does not know anyway. When I take him to the beach on our little cruise, though he does not talk, I stroke his face, kiss his sweet brown cheeks, tell him it is not his fault and that I will never leave him. The tears., like that sweet little lady, roll slowly down his cheeks. Never, will I believe they cannot hear us, and feel the power of love.
There is a lady who seems completely lost. No movement, not able to talk, no smile, eyes closed while feeding. She has no visitors. No one on one stimulation. I couldn't help but wonder, is she so lost because no one cares enough to try to interact with her?
I reached WAY out of my comfort level and tried the techniques this lady demonstrated at a music show today. It was very difficult for me........ but after talking soothingly, rubbing here cheek, she did open her eyes. She DID smile! Tragic that she has been locked inside because no one cared enough to help draw her out.
The smile was priceless!! It really affected me, touched me deeply.
I felt a bit depressed when I left because I think of all those who are abandoned. All that have just been given up for lost. It made me feel helpless. But then like I always do I looked for a bright spot, that silver lining, even if I have to paint it my damn self <smiles> And I remembered that old saying about how one person may not be able to change the world, but you can change the world for that one person.
She most likely doesn't remember, but in that moment she was truly happy. That just has to count for something! I am not sure I have the fortitude for the task, but I can't seem to help how deeply the abandoned effects me.
What a touching story. Even if the joy was for the moment, you made the connection. After all, our lives are made up of moments. We, the caregivers feel the impact of this disease perhaps more than even the patient. What a heavy toll it takes on us, but it is those moments that you gave that lifts us up. Thanks for sharing.
Lullie and Cheval, thank you both for your lovely comments. There was another music show today but I wasn't able to go to her again. I felt such a coward. I have adopted so many of the abandoned, but never one who is withdrawn to her degree. I will try to muster my courage up again tomorrow.
I believe it was Marilyn who shared a study that offered proof that these moments do matter to them. I will have to go in search of it.