Here is the story of our Alzheimer's journey. It was on our local news this week. I have a feeling many of you share a similar story! My husband just went on hospice, I signed the papers last night, he is 50!
You might have to copy and paste the link if you can't click on it.
Sandy, thanks for making this available to us. I was very touched. It brought back memories, but more than that, it showed me what it was really like - the love, the care, the connection that is still there as I saw how he responded to you in his own way. When I was in the midst of it, I didn't see it so clearly, being beyond weary and being distraught. Peace for all valiant caregivers and their spouses.
Thank you so much for agreeing to share your journey on TV. The face of Alzheimer's is not just an elderly face, and that needs to be recognized. Alzheimer's Caregivers face such challenges, yet we seem to be just silent voices.
Sandy I just cannot tell you how much this news clip has meant to me. The first thing that hit me, of course is how gorgeous your family is. The next thing is when you mentioned your husbands first symptoms, the shirt buttons and the belt missing loops. That was exactly it with my guy, and he seemed fine otherwise. Hard sharp memories. And his beautiful person, he just looks like such a sweetheart. How he calls you honey, just like Dado did with me, and how his hands are curling in to fists. Oh Sandy I so admire you and am so glad you have your faith.
I am going on Friday to do an interview on Alzheimers with our local paper, West Hawaii today. I was wondering, would it be wrong to suggest they read this story, could I give them the link? It puts a face on the youth of this disease, and even though I have photos the film is so much more powerful. Please know I would not do anything to infringe on your privacy. I will put my email in my profile if you want to let me know. If I do not hear anything I will certainly not pass on this information.
Your story just gives my heart a little hope. I only wish I can do that with our three and a half year struggle...and how, can I give hope from this experience? The only things I can think of are-that I can help someone else to smooth out the journey, with information. And, a deeper hope that my guy is at peace.
A huge MAHALO, thank you, for sharing this. My heart and prayer go out to you and your family today.
THANK YOU. THANK YOU. THANK YOU doing that segment and sharing it with us. The most important information I would like everyone who is not involved with Alzheimer's Disease to take away from that story is that it's NOT JUST MEMORY LOSS. No one who hasn't been through it understands what dementia really is - the dismantling of a human being.
I am going to put that link up on the home page under Breaking News.
Thank you Sandy for sharing your story and thank you Joan for posting it. Sandy's comment about driving lessons hit home---the year my husband was diagnosed at 53, my youngest turned 16. And yes, how important that people understand that Alzheimer's is not just memory loss! After 8+ years, the most common question I get is STILL "does your husband still know you" and my response is "well, he hasn't spoken in almost 4 years, so hard to tell." That response always shocks people----and then they want to know why he doesn't talk. Well, for the same reason he doesn't walk, feed himself, is having a hard time swallowing, etc. Dementia is truly the "dismantling" of a human being.
Thank you for sharing that Sandy. It's a newstory which is important but for me I felt as though I had entered your life for a few minutes and looked at your life almost from your eyes. We go through such similar things and yet always so unique. I appreciated seeing that.
Thanks everyone for your encouraging words. It helps to remember why I shared our story in the first place. We are not alone, it's so helpful to know you all understand and can relate!! And Coco please feel free to share our story I am fine with that! Thanks for checking! I am so busy keeping up with everything, otherwise I would love to email each of you personally. We are certainly in this journey together. Saying a prayer for each of you tonight.
Wow--I just watched it. Every word just resonated and made me think of those years when DH was going downhill--especially the comment about missing him because he's still here but he's just a shell. Oh yeah…been there, done that. "I miss being married." Yup. How many million times did I think the same thing…when I was caregiving and caregiving and caregiving. A wife legally, but not really. And now Hospice. Yup, did that, too. It took real courage to go on TV…I don't think I could have pulled myself together to do that…but what a fine thing to do in terms of helping to educate the public. Thank you for getting the story out there.
Sandy, Thanks so much for posting the video. I have been following your blog for years, and it was sad to see all the changes in such a short time. It is so brave of you and your family to put yourselves out there in order to help others understand what the disease can do to a young family. I know many prayers are with you. Thanks again.
Thank you for sharing your family's story. I am sure it was hard on all of you to reveal such private moments and feelings, but your courage and willingness to come forward will educate the public dementia is not a memory disease, but a terminal brain disease and can affect anyone of any age. Thank you for educating the public.
I often think I should find a way to publicize my journey with Rich, but now that he's almost 65 I believe it would not have the same impact as your story because he falls into the age group typically diagnosed.
Sandy, I also thank you for sharing your story. I can't imagine raising children and being a caregiver to your husband at the same time. What a beautiful family. How heartbreaking for all of you. Sending you prayers tonight.
Sandy thank you so much for the go ahead. Today I go for my interview, and I will share your story. Our story is much the same, however, I did not have him filmed, and your husband is so much younger. Also I have been gleaning things to say from all of you. These stand out...
1. Dementia is not just forgetting, it is very physical and extremely emotionally painful. (IT IS NOT SOMETHING TO JOKE ABOUT!!!)
2. Please respect our dementia sufferers and treat them with dignity, let them know they are loved.
3. Try to understand even just a little, how very hard this is on the caregivers, and don't just offer help on the phone, just show up and do it!
4. Yes research is very important, and funding is needed. However, IN HOME HELP and COUNSELING and HELPING caregivers cope , including FINANCIALLY, is going to help NOW.
Please add anything else you feel I should point out. I am home for about half a day today and then heading in. Love you all.
PS. today is Dado's birthday..he would have been 66.
Sandy, I just watched the video you and your family did....very touching and informative in letting people know the realities and heartbreak of dementia. Bless all of you! And Thank You.
Well done. SO evocative for me...your husband's affect and responses in the video remind me so much of how my husband was by the time I'd placed him in Sunrise. I was just teaching the first of my kids to drive at the time he began having symptoms, and it was more about visual and spatial processing than memory at first. Plus that withdrawal from emotional awareness and involvement that is so clear from your video.
So important for people to see someone like you, your young age and your children dealing with this disease. I was riveted by your story. My husband is at a similar point to yours. My children are slightly older. Last one a senior in college. I am trying to keep my husband at home with caregivers while I continue to work but like your husband, he is having problems walking and eating. So challenging and isolating and financially draining. I applaud you and I also applaud the reporter. Thank you for sharing.