Even though our mom is going through chemo again (like last fall), I’ve decided to hold an event that promises to be fun with the help of some very generous women: the owner of Grapes & Hops and Kelly of Kelly’s Lot. A lot has happened in terms of Lydia’s condition since about the middle of October last year. In a weird coincidence, one of the people who works as a therapist at Lydia’s nursing home who is also named Lydia, told me a few weeks ago that her brother in New Jersey was also diagnosed with FTD, but the behavioral variant instead of the language variant that Lydia has. To me, this means that this disease is more common than we think. How many people named Lydia are there out there? And how is it that two people that I know who are building contractors both have relatives who have FTD? I think that it is so misdiagnosed that the numbers are undercounted.
The day after I talked with a group of friends about how Lydia had wandered from her skilled nursing facility right after our last get together in December, they called to tell us they thought Lydia had a grand mal seizure and fallen, hitting her face on the edge of the bed and they sent her to the hospital to get CT scans and other tests. She was admitted to the hospital from the ER to get the seizures under better control.
Lydia–my brilliant and multi-lingual role model–earned a degree in chemistry and then an MBA in finance and marketing. She worked in Wealth Management in Beverley Hills, was active in professional marketing and financial associations, her alumni groups, fundraisers, Toastmasters, etc.
With her great love of art, culture and adventure, she had traveled around to many countries solo, but unfortunately, this disease has robbed her ability to process language both incoming and outbound. One often-misdiagnosed neurodegenerative disease, and her dreams of life are dashed.
It’s an education for people every single time we meet a medical professional. It’s often diagnosed as depression, bi-polar, schizophrenia, Alzheimer’s, mid-life crisis are often and the meds for those may hurt instead of helping in addition to wasting valuable time.
I want to help people avoid having to go through the hell Lydia has.
Even at this hospital, the 14 nurses and doctors were unfamiliar with the disease. This is not the first time we’ve seen that happen in the hospitals or other medical facilities she has been to, even after all the test results we take to EVERY facility when she gets shuffled through our “fractured medical system.”
Lydia’s diagnosing doctor is the chairman of TheAFTD.org Medical Advisory Council, and other doctors still don’t take advantage of his team’s experience and expertise.
Please help me help others avoid this terrible odyssey by raising awareness of this disease. Every little bit helps. Please spread the word to your networks of the AFTD’s 2017 With Love campaign. Any donation helps (especially with a $90,000 matching gift), but I really want to RAISE AWARENESS, and that’s how you can help.
For more info about Frontotemporal Degenration, please see TheAFTD.org
Today, Lydia went missing from the secured facility that she’s been in since her last hospitalization around Easter of this year. When I got the call from the facility, my heart sank to the floor. I had reached out to Nancy’s husband (nancyismissing.blogspot.com) in October after reading about her wandering off, saying “stupid” like Lydia says, and seeing the LA Times full-page ad they had run on a Satruday. I had told him to check the psychiatric wards in the area, because although Lydia has FTD (Frontotemporal Degeneration) and was diagnosed in 2014 by the current Chair of theAFTD.org ‘s Medical Advisory Council,
A) most doctors don’t know what FTD is, and
B) they misdiagnose it as schizophrenia, bipolar disorder, depression, Alzheimer’s, or they think the patient is on drugs or alcohol.
I had gotten a few photos of a potential “Nancy” texted to me at the beginning of December, and because Lydia and Nancy are the same age, I have a background worry about Nancy.
I’m sure you can imagine the shock I had when I got the phone call this AM. I called and asked Nancy’s husband if he had any advice because Lydia had slipped out of the facility at 7 AM and it was 9 AM–who knows how much ground she could have covered in that time–other than the seizures, aphasia and FTD, Lydia was in pretty good health and walked all day in the facility. Kirk told me to get the LA Sheriff and search dogs involved right away and get the businesses in the area with cameras not to delete their videos. I got our mom, Lydia’s medical records, and all the photos of Lydia’s clothes we’ve dropped off to the facility to aid in the description for the police and any volunteers and started driving from Ventura County.
In the car, we called 911 and were connected with the Malibu Sheriff station which then sent me over to the North Hollywood station. The facility staff was there, and one of the officers said they thought they may have found Lydia. The nearby Burbank Police had taken her to the hospital. The facility staff texted the address of the hospital, and we met them there with other members of the staff. Once we got there and told the ER doctor she had FTD, they canceled some of the tests they were thinking of running, but she hadn’t eaten yet or had her AM meds. They tested for a UTI, but she had just finished taking antibiotics for the only one she’s had at this facility. Her anti-seizure meds were in the correct range.
The ER doctor and staff were fantastic EVEN THOUGH THEY’D NEVER HEARD OF FTD, but if we weren’t involved, she would have been in the psychiatric ward of the hospital, which is where she was initially placed. On a happy note, she was transferred back to the facility, and we are all breathing sighs of relief.
1. It only takes a second for a confused person to get lost.
2. The Police can be very helpful and the hospitals are trying to do the best they can with limited information from a patient who can’t advocate for herself.
3. Ambulatory dementia patients are often misdiagnosed as psychiatric patients.
4. Lydia was found near a dog park from what we’ve been able to gather. She likes animals and as best we can tell, was saying the name of her beloved cat, repeatedly.
5. When dehydrated, dementia patients are even more confused. They may not be able to let you know they are hot, cold, thirsty, their feet hurt, are wet, need to go to the bathroom, etc. and may become agitated and lash out because we don’t understand them and they are angry because we aren’t helping they get what they need.
6. Volunteering efforts like what the people of nancyismissing.blogspot.com are doing are amazing and help even when they might not think they are. You are all making a difference!
I’m amazed by all the smart things they are doing and hope Nancy can be returned safely home like Lydia was to her skilled nursing facility.
The facility where she is in hospice had a holiday party for all the residents. Initially, we hadn’t planned to go, but one of her caregivers the Sunday before encouraged us to come, so we reversed our RSVP in time and went.
It was the best family gathering we had had since the hospital right after she got out of the ICU in March. She was a little agitated at first, but after one of the caregivers took her to the restroom past the waiting crowd, she settled down and was able to enjoy the dinner and dessert.
We were able to observe in the dining hall how good the caregivers were with everyone. Truly a difficult job, but they were caring, helpful and showed genuine, cheerful attitudes, even with difficult residents.
We were so glad that her caregiver encouraged us to come. She said the family dinner event was nice. The truth is, it was more than that. Way more.
We are so grateful that she’s with these caregivers.
Caregiving is a very difficult job, but these people are able to figure out how to handle so many unique situations, they are the unsung heroes in the medical field. In the past year, we’ve seen some apathetic caregivers, openly hostile caregivers who need to be doing something else for a living, and a few good ones.
This place she’s in now has many good caregivers, and we were able to see them in action with a huge room of tables filled with people and their families. Not all are sick like Lyda–most are in the assisted living section–but you could see their attitudes with everyone, and they weren’t faking it.
This past year has been a difficult one for our entire family, but especially for Lydia. It was good to see her get to enjoy herself a little like she used to, and to have a nice dinner with her family. I think that was a huge relief for our parents, too, to see her calm, and to be a little more like what she was before this illness started hurting her so much.
Thanks for everyone’s support this year.
Please help spread the word on “Giving Tuesday.” Like make it go viral in a good way….
I saw this article on the cover of People Magazine when I was at the dentist yesterday: http://www.people.com/article/robin-williams-committed-facility-suicide-susan-williams
While I normally don’t read People magazine, the Robin Williams photo on the cover did catch my eye, since initially when I had heard about his death, I thought I had read about him having Parkinson’s. So I was curious. And sad.
When I was looking around to find out about TheAFTD.org’s upcoming events, I saw that today was the start of the conference:
Held in the United States for the first time this year, this conference focuses on dementia with Lewy bodies (DLB), also known as Lewy body dementia, which includes DLB and Parkinson’s disease with dementia. A particular focus of the conference this year (Dec. 1-4) is on the prodromal aspects of DLB. http://www.theaftd.org/4conferences/international-dementia-with-lewy-bodies-conference-fort-lauderdale-florida
While I have said there is no celebrity for increasing awareness for FTD like Lou Gehrig and ALS or Michael J. Fox and Parkinson’s or Ronald Reagan and Alzheimer’s, there is a documentary Looks Like Laury, Sounds Like Laury that will be coming up again in one week.
On TV: Tuesday December 08, 2015
I’ve seen this documentary with our parents. This stylish Laury looks a lot like my sister Lydia, and it was helpful since we now have a little bit of a roadmap from this spring as opposed to just being blind.
Another irony was when I was looking to get the correct name of the actress on Orange is the New Black who worked on this documentary, I again went to People Magazine and found this:
People Magazine seems to be doing a better job of getting the word out about this than the bigger media, like when:
Apr 23, 2009 – He gave a response to a question regarding FTD by discussing Alzheimer’s disease – he did not seem to know about the diagnosis of FTD….
Like one of my sister’s doctor said this spring when I asked if he knew about FTD, he said “I read about it in medical school.” Maybe Dr. Gupta knows more about FTD now.
We saw her hospice doctor over the weekend. She said Lydia seemed stable with maybe a slight decline since 2 months ago. We need to get her feet looked at by the podiatrist again, because “she’s like an athlete, she walks fast and all day long!” according to her doctor who got to see her in action. Yesterday was her birthday, so we took cards, gifts and cake for all her fellow residents.
Ironically, I got an email from theAFTD.org saying that there was an ad placed in The New Yorker this week on her birthday. It’s the one about misdiagnoses. Truly ironic.
RADNOR, Pa., Sept. 29, 2015 /PRNewswire-USNewswire/ — Many worthy causes ask us to run or walk a 5K to raise awareness of a medical condition, but not the Food for Thought campaign from The Association for Frontotemporal Degeneration (AFTD). Instead of working up a sweat—or freezing under ice buckets—participants are invited to share some food and spread the word about the life-altering brain disease Frontotemporal Degeneration (FTD).
“FTD is devastating for those affected. Yet it is little known and it is poorly understood,” said Susan L-J Dickinson, AFTD Executive Director. “It can take years for families to get a correct diagnosis.”
FTD is the most prevalent form of dementia for adults under age 60. It is frequently confused with Alzheimer’s, Parkinson’s, and certain psychiatric disorders. Misdiagnosis is costly for patients and the medical community.
In its third year, the Food for Thought campaign is gaining momentum, with events now planned in 37 U.S. states. The goal is to raise funds to fight FTD, while raising awareness during World FTD Awareness Week from October 4-11, 2015.
“FTD affects a person’s executive functioning and social skills, and eventually prevents human connection,” said Dickinson. “Sharing food brings families and communities together,” she added, “and these events foster a sense of connection for people facing an isolating disease.”
-To support the campaign, search this list of events in your area. Please share with your friends on Facebook.
|World FTD Awareness Week (October 4-11) – From conferences in Australia and The Netherlands, to a concert and art gallery in Spain, to a citywide proclamation in Canada, constituents around the world are making their voices heard in the fight against FTD. Click here for ways to join this crucial week for awareness!|
A couple of weeks ago, a neighbor asked me “Who is taking care of you? You are taking care of your whole family.”
Which is only sort of true (we are all taking care of each other, from across the world and here locally). But without hesitation, I answered Diana. She’s my neighbor and makes sure I get to vent almost every single day.
Unfortunately, this hero will not be at the event Sunday. Fortunately, she’s celebrating a long-planned special birthday with friends this weekend!
Another hero has contributed to the silent auction and is another huge source of moral support. Plus, I have all my friends on Sunday night, like Margy, Judy, Peter and the rest of our group who have helped with Lydia and with the event. It’s through Lelah’s Sunday night group that I met Kelly’s Lot. Couldn’t do it without you all–thank you.
That’s one of the problems with this disease. It strikes people in the prime of their lives, and most people have children AND elderly parents they are caring for. Then, if they are trying to hide the disease from their employer and lose their job, they lose very important benefits like disability insurance. In the 2008 financial disaster, Lydia lost her job and her health insurance, which delayed diagnosis, let alone treatment.
My sister’s hospice doctor said very smart people like my sister develop ways to compensate for what they are losing and are able to hide it from their families for a long time. Lydia would say she was stressed at work, but couldn’t say what was causing that stress. Others with the disease have said they have made inexplicable mistakes at work.
If you don’t know what’s wrong, it can be a very lonely place. I’m trying to help others avoid the hell Lydia’s gone through and my family along with her. My family and I are fortunate to have such good friends and neighbors. Thanks, friends!
Yesterday, we took Lydia to the actual doctor’s office. She knows she’s sick and can’t drive or read, and it took two of her caregivers, our mom and me to get her into the car. She was very frustrated, and I wasn’t sure we were going to make it and was on the phone, texting and calling her doctor before we got out of where she lives. But with the second caregiver, we were able to do it.
She gets calmer in the car while we are driving for some reason, and I would take her to Barnes and Nobel weekly while she was living with our parents. But in between two hospital visits in September 2014, when we were in Target, I pointed out the Cat in the Hat book to her, and I think then she realized she cannot read any more.
The primary progressive aphasia part of the FTD that she has wasn’t diagnosed until around February 2014, and makes it hard for her to communicate. When we got into the doctor’s office and into the treatment room, it took about 15 minutes for us to get her to sit on the treatment table so she could be examined properly and then treated. And this was after she’d been given two meds in the treatment room.
After she was seated and calmer, she actually said some things that had us smiling and laughing, but wow, what a hard road to get there. Mom and I both needed a drink after we did it the first time, and I’ve never heard Mom say she needed a drink. Driving Lydia that time a couple of months ago was the scariest thing I’ve been through since I worked at Wall Street and Broad, across from the New York Stock Exchange in September 11, 2001.
I learned from someone today who contacted me through this site that there used to be an FTD group in Camarillo until the local Alzheimer’s group stopped it–I’m not sure why. That’s unfortunate for people who have the disease and their families. When I asked my sister’s hospice company for a list of support groups, the only one for FTD was in Riverside County, which is on the other side of the state from here–and California is a big state.
This spring when we were looking for places where Lydia could live and get the appropriate care, we learned from the social workers in the hospitals that if she were a drug addict or an alcoholic, there were many options available. But because she’s neither and younger than 60, she falls through the cracks of our medical and care system.
She lost her job at Wells Fargo in the 2008 financial disaster, then the next trust company she went to work for got merged into a bigger bank, eliminating her position. Thus, like many others at the time, she moved in with our parents to save money. The ACA was not yet in effect, so her medical care was the bare minimum she could afford to pay, essentially out of pocket.
In the meantime, after a long evaluation, the state-appointed doctor recommended her for complete disability. The final decision is by the state, and he could not tell us the diagnosis.
After she had her first seizure–just 2 days before she got onto Medicare because now she was considered completely disabled–the neurologists said for her to stop taking a certain medication. However, the diagnosis wasn’t revealed to us by whoever evaluated her to get her onto Medicare and Social Security Disability, so we didn’t even know what we were dealing with until she finally got an appointment to be seen by a team of doctors at UCLA.
But these weren’t her treating doctors, and the local doctors she was seeing were overwhelmed with others in the Ventura County medical system. And one of her specialist doctors told her to get off the drug by tapering off in only 2 weeks. That caused also huge problems for her and my aging parents, which was awful.
This is part of the reason why I have started this blog and am hosting this FTD awareness event on September 20,2015, because people who are going through this are basically thrown to the wolves. They don’t deserve that. They have been valuable, educated, contributing members of society, have families, and deserve to be treated better than “go flounder on your own.”
Something to keep in mind for other families with dementia diseases and big behavior changes:
Saturday, my mom and I met Lydia’s hospice doctor before and after she saw Lydia. When we talked with her afterwards, I indicated that I could always tell when something seriously was going wrong for Lydia when she would lash out at me. One of the things her doctor said was that when someone’s behavior changes suddenly like that, that is an indicator of an infection. Sometimes they won’t show an elevated temperature, and you’ll have to wait to get a blood test or a urinalysis back, but in the meantime the person is suffering, so you almost need to treat for infection first and then find out afterwards through those two tests.
The last time she was sick, she was dehydrated and fell, AND had a urinary tract infection (UTI). She looked like she was getting better, and the 12 hours of one-on-one nursing ended, but then she fell again the next day, hitting her head and got a scrape above her eye. They treated the UTI, we had a caregiver with her 24 hours a day to keep her from falling, and learned there was such a thing as a bed alarm with a remote chime so it wouldn’t scare her if it went off. Before this couple of falls, she wasn’t sleeping well.
When you don’t sleep well, a lot of things can be affected. That’s important for caregivers, too.
When we saw Lydia at the facility, she was in the room where the TV and keyboard are. She greeted me and kissed me on the cheek which is normal, but what is abnormal is that she was fairly calm. She allowed him to take a photo of us. Then he showed her pictures that were on his iPhone of a huge Great Dane, his housemate the Siamese cat, and the owner of both, Lelah, where we have our Sunday potluck. He also showed Lydia pictures of sunsets and clouds. She reacted and said that’s nice.
When he got to the photo of Margy’s painting that she has donated for the FTD Awareness Dinner – Food for Thought: Hollywood Beach Sunday, Sept 20, she said “Wow, that’s pretty!” He described that Margy has lived in Fiji and this was reminiscent of under sea life that she had seen there. At that time, Peter didn’t know that Lydia had actually been the only person in our family to travel to Fiji, and I don’t think Lydia made the connection that she herself had snorkeled there, but I’m happy to report that she liked Margy’s painting.
I’m grateful for the time that Peter spent with Lydia, and me in the car driving to and from her assisted living facility. Because of the time he spent with me, I feel a lot better support from just the generous resource that he is and the knowledge that he has had in supporting families in this kind of crisis. I wouldn’t have known Margy if it weren’t for Lelah having the dinners at her house, nor all the other supportive, inspirational and creative friends I’ve met there. Thank you all.
This March, when Lydia was in the hospital, she had a seizure and ended up in the ICU. Mom called me while I was finishing something up, so I came home to go with them to the hospital, an hour-plus drive away from them during Southern California rush hour. When we got there, inexplicably, they were taking in all the medical information again, even though she’d been on the same floor, a hallway and a half away. I was shocked and asked them if they wanted me to go get her file from around the corner. No. So, I said I wanted to talk with the ICU doctor who’d seen her. And I think the ICU staff was shocked that I insisted on speaking to the doctor. I admit I pretty much yelled at him because after about 2 hours of not knowing if she was going to live, I was a more than a little freaked out. And then he looked at her records while we were on the phone and said, “That’s not the way we’re supposed to treat people.” He took an active interest in learning about FTD, helped by connecting us to resources we would have no idea existed, forwarded information on the illness to me that when I sent it to my mom, she commented, “Wow, it’s like he’s treating us as through we’re peers.” Who is this hero? Dr. Tim Stacy
This hospital also had another hero, who met Lydia a few days before this ICU event: her current hospice doctor. When I asked the hospital for a hospice evaluation, they had this doctor evaluate her. When she called me, she said Lydia was a hospice patient. I said was it because of the FTD? She said “Yes, FTD is always a hospice diagnosis, because patients will not get better.” I asked her if she’d ever treated patients with FTD, and she had: 4 in her own medical practice, and 2 prior to Lydia who came to her as hospice patients. As far as I am concerned, she’s the doctor who has had, by far, the most experience dealing with patients in my sister’s situation of any doctor she’d seen before or since. Although she was finally diagnosed after 30 months of searching for what the problem was, AFTER she’d gotten on Social Security Disability (too late for the compassionate allowance), the diagnosing doctors said talk to the local neurologist, and her other doctors didn’t cross pollinate, so she fell through the cracks in a way, until June, when this doctor helped us get her out of a terrible situation and under her own care. Who is this hero? Dr. Alina Lopo
Thank you both, from all of us.
Like Julianne Moore’s Academy Award Winning role as Alice, a 50 year old Columbia University Professor in the film Still Alice, my ambitious Los Angeles-based sister Lydia has also shown signs of dementia, but hers is caused by FTD and not Early Alzheimer’s disease like in the adapted fictional novel by Lisa Genova, set in Cambridge. Lydia’s disease has caused her to lose her ability to communicate and read, which is horrifying for her as she has progressed through the awful journey she is still experiencing.
“So far from who we once were.”–Still Alice, movie
In the film, Alice has three children who are possibly carrying the gene. In my sister’s case, she has no children and has been cared for by me and our parents who are in their late 70s. No one should have to go through what we did, so this collection of information is what my mom and I have gathered while trying to get help for Lydia while having to get her diagnosed after many delays, the lengthy process our mother had to navigate for getting my sister onto disability after losing her job during the 2008 banking fiasco, the numerous tests that Lydia had to endure….many doctors will incorrectly diagnose as schizophrenia and bi-polar disorder, wasting valuable time and brain-power.
While the fictional Alice was a professor of linguistics, Lydia spoke multiple languages, yet, tragically, now she has a hard time with English. She earned a degree in Chemistry at California State University Northridge, and worked at Redken Laboratories while earning her MBA from California Lutheran University and then transitioned to financial services. Like Alice in the movie, Lydia traveled world wide, with our family to Southern Europe and Australia and Asia, and by herself to Northern Europe and the South Pacific–including Fiji, the inspiration for the beautiful painting, Alison’s Reef II, generously donated by world-famous artist, Margy Gates to help us raise awareness for this awful disease.
People with FTD are losing connections in the fronts and sides of their brains. As I learned from the YouTube from the 2005 Caregivers Conference, an easy way for Dr. Coslett to tell if someone had FTD was to ask them to say Arbitrary and Colonel.
I just found out about this: http://mentalfloss.com/article/58515/why-colonel-spelled-way
Learn something new every day…..