I received an email from Rita two days ago, and she has given me permission to share her story.
"My husband Joe was diagnosed in 2014 with CBD. He has fallen 6 times since 2012. Three weeks ago he began talking about other people in the house and he does not know I am his wife or my name. We have been married 54 years and I am heartsick. He is incontinent and cannot dress himself. He gets P/T twice a week. We have no help as of now. His doctor is at Cornell in NYC. He was given 12.5 of Seroquel beginning today. He takes 75 mg of Effexor. He wore the Exelon patch for a few months. Discontinued it. He was nasty using it.
It is 25 days today that he does not know me."
My heart goes out to her. She needs those of us who can to reach out to her. Please offer your support and any ideas of what you know might be available in the New York City area. Or share your story. Comment here and I'll make sure she knows people are thinking of her.
Anyone else out there who is looking for help and support, a phone number was shared with me today for the ElderCare locater line. 1-800-677-1116 If you call this number, they should be able to put you in touch with the closest Area Agency on Aging. Every state has them. The Area Agency on Aging should be able to help you with what community resources may be available to you for support and help. I don't think anyone can make it through this journey with out the support of others on a similar journey. I'm not as far down the road as Rita is. It is scary of think of what's in store, and easier to not think about it right now. But I can't ignore the fact that I'll be there one day, and I hope others will be helping me. I have to do what I can! Because I want people to do what they can to help me when the time comes.
On facebook, someone posted something about Alzheimer's Disease & Dementia. They called it "Public Enemy #1." Here is what it said:
You can miss someone who died, you can miss someone who moved away, but the worst is when you miss someone you see everyday.
Today, for Rita, she is going through some dark days. She is missing Joe. Today is the 25th day that he doesn't know her. I hope you can take a minute to share something with her, for every reader of this blog who is dealing with a loved one with some form of FTD, whether it be the behavior variant type that my husband suffers from, or CBD , or some other form. If you know of resources in Rita's area, please let me know. If you have a story to share, please do! You can email me at sorodftd@gmail.com, or use the comment section here to share with all. THANK YOU!
More later.
No comments:
Post a Comment