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.
Friday, November 6, 2015
Wednesday, November 4, 2015
Chapter 30 A New Chapter
It's been awhile since I have posted. I've received an email from a woman with a loved one with the CBD form of FTD. I'm waiting to hear back from her about sharing her story. She could use some help and support, and I'm hoping someone reading her story maybe able to do that for her, including the folks at the Association of Frontotemporal Degeneration.
I'm in a better place these days. It's been over a year since my husband's diagnosis. Do I notice change? I do. His OCD tendencies, "industrial behavior", are far more evident. His inability to comprehend written materials that come in the mail seems more serious. Changes are subtle, and yet sometimes seem glaring. He is grumpier. Gets frustrated a little more easily. I am not letting him drive at all now. He is still suffering from the double vision, yet the latest visit to the ophthalmologist last week indicates it continues to get better. The doctor believes it should be gone by the end of December. However, as always, something else has showed up. Dave apparently now has a hemorrhage in that same eye. So that will get checked again the first week of December.
We also had his latest scan with the neurosurgeon to check on his chronic subdural hematoma. It continues to shrink and isn't causing any apparent problems. However ...... I'm getting tired of saying that!!! However, he is concerned about the 4th nerve palsy, considering the atrophy in his brain, so we'll see the neurosurgeon in April for another CT scan.....never ending.
I've started a new job after 30 years with the same non-profit. It was time for a change. I needed something adventurous and new in my life. Something positive. It was a great move. I'm really enjoying learning about a new organization. I took a cut in pay, and chose a cut in hours - 30 to 35 a week - and while things might be tight financially, I am feeling such relief. I didn't know how poorly I felt, how depressed I was about life, until I started feeling SO good about six weeks ago. I am so glad I took a leap of faith, took a risk. It feels like a whole new chapter of life. With the stress at work and the stress at home, I just could not take it anymore. So now that work is manageable and I'm looking forward to it each day, and I really enjoy all the people I work with, home life has also improved greatly. I'm even looking at adopting a beautiful dog that needs a home. I feel she will be good company for my husband during the day, and the routine of her care will fit right in with my husband's ordered schedule he keeps. And she'll be good company for me when I get home each day! Maybe even greet me at the door! We have a trial visit with her this weekend, and that's another thing I'm very excited about!
Life feels good. I feel strong. I feel positive. It's amazing. So it's time for me to start spreading it around. I want to find a way to contribute to the efforts of awareness and support for FTD. I'm ready to get back to it! I'm checking into trying to get a support group started locally as there is nothing currently that I've been able to find.
We'll see how long this part of the ride lasts! But it sure feels good to be on the upswing for a change. Stay tuned!
I'm in a better place these days. It's been over a year since my husband's diagnosis. Do I notice change? I do. His OCD tendencies, "industrial behavior", are far more evident. His inability to comprehend written materials that come in the mail seems more serious. Changes are subtle, and yet sometimes seem glaring. He is grumpier. Gets frustrated a little more easily. I am not letting him drive at all now. He is still suffering from the double vision, yet the latest visit to the ophthalmologist last week indicates it continues to get better. The doctor believes it should be gone by the end of December. However, as always, something else has showed up. Dave apparently now has a hemorrhage in that same eye. So that will get checked again the first week of December.
We also had his latest scan with the neurosurgeon to check on his chronic subdural hematoma. It continues to shrink and isn't causing any apparent problems. However ...... I'm getting tired of saying that!!! However, he is concerned about the 4th nerve palsy, considering the atrophy in his brain, so we'll see the neurosurgeon in April for another CT scan.....never ending.
I've started a new job after 30 years with the same non-profit. It was time for a change. I needed something adventurous and new in my life. Something positive. It was a great move. I'm really enjoying learning about a new organization. I took a cut in pay, and chose a cut in hours - 30 to 35 a week - and while things might be tight financially, I am feeling such relief. I didn't know how poorly I felt, how depressed I was about life, until I started feeling SO good about six weeks ago. I am so glad I took a leap of faith, took a risk. It feels like a whole new chapter of life. With the stress at work and the stress at home, I just could not take it anymore. So now that work is manageable and I'm looking forward to it each day, and I really enjoy all the people I work with, home life has also improved greatly. I'm even looking at adopting a beautiful dog that needs a home. I feel she will be good company for my husband during the day, and the routine of her care will fit right in with my husband's ordered schedule he keeps. And she'll be good company for me when I get home each day! Maybe even greet me at the door! We have a trial visit with her this weekend, and that's another thing I'm very excited about!
Life feels good. I feel strong. I feel positive. It's amazing. So it's time for me to start spreading it around. I want to find a way to contribute to the efforts of awareness and support for FTD. I'm ready to get back to it! I'm checking into trying to get a support group started locally as there is nothing currently that I've been able to find.
We'll see how long this part of the ride lasts! But it sure feels good to be on the upswing for a change. Stay tuned!
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