Dementia + Divorce = devastating reboot

Curious if this old format still works, here's a try. My wife of 30 years has decided she wants a divorce despite my dementia, retirement and end of life issues so after a long long time, it is soon to be over and as I had predicted years ago, I will be homeless and carless. At least until I turn the settlement into a reboot life. Enter my current dream; Prius Living

After caring for my mom for 6 months in Oklahoma and living with my parents, then two different friends, I had a good idea of what was essential for me in a living situation and what I could live without. So when finalizing the divorce (still eluding me) and dealing with COVID19 lockdown, I returned to Memphis to packup what is mine. Today I am beginning to pack up what is sentimental and priceless to me and storing it. What is not sentimental or priceless I will either sell or give away. I hope to find a 2017 Prius V and begin to take a long road trip to national parks, state parks, hiking and visiting friends in North America.

I have joined a few forums and such for inspiration, but it really boils down to what each person who chooses this reboot needs and we all have different needs. What is important to me is reliability, climate control and space for my dog (and cat?) so I am swapping my instant tent for an SUV tent, keeping the coleman stove and adding in a few key items. Photos coming soon. My adult sons will be helping me organize the trip, tracking my location and assisting with budgeting. I am making this move because my monthly income is $1010 after paying my health insurance. Finding affordable ($500) rent in this city in a walkable and safe neighborhood is hard. I had wanted to do a grand american retirement national park trip for a long time, but I lost my motivation, my spark and my courage when I thought of being alone, demented and driving. I don't think I can do it forever, but I will try it for several months and see what happens.

And the wait goes on...SSDI

about a zillion years ago I applied for Social Security Disability. I wasn't happy to apply, it seemed like defeat. I was depressed at the very thought and found the 3,000,000 forms more than overwhelming. I got through it eventually (took me about 3 months!) and then my doctor didn't turn in any records so I was denied, but that took many more months to find out. That was 2006. I'm still waiting to be approved. I got a letter saying I was slated for a hearing with an administrative judge in September 2009. I have read from other people that the hearing is just another hurdle, it is in no way the finish line. We won't get rich from my SSDI, but it could make the difference between having any medical care and having none. If the two year wait is applied (2 years from date of disability) then I'm past that. I hope they approve me for medicare immediately. SSDI payments could be over a year away.
I wonder when I'll ever be able to contribute financially to my family again? DVD sales are seriously off, no mystery shop assignments from Starbucks (guess they're cutting and back too) and the dog I babysit is finally home. Dementia sucks, but dealing with bureaucracy while battling the effects of dementia really suck. At least I am not in end stage...yet!

Health Talk producer comes to visit

Carolynn Delaney came and shot video with the help of a local camera crew. I think the idea is to make several videos for Health Talk, each focusing on a different aspect of Dementia (diagnosis, living, plans for the future?) She was a joy to work with! I would welcome her back any time! Health Talk is an amazing place with personal stories, professional information and "ask the doctor" format all in one place. I did not take many photos as all, but here are a few.

Alzheimer's Public Policy Forum 2008

I received a scholarship to attend the Public Policy Forum in Washington D.C. this year. The catch was that I had to share a room with the director of our local Alz. Assoc. The scholarship was apparently limited, I never received specifics. Everything came through the director. Next year I would wish for firm information in hand.
The best part of the week was the event Monday from 9 to noon. It was a Town Hall meeting in which the Alz. Assoc. listened to people with dementia. The moderator asked that caregivers not speak. Unfortunately some of them didn't follow the rules :( It was nice to hear others who are walking this path with me share their experiences, their opinions and their hopes. Next year I hope we have a break out session during the public policy forum just for people with dementia. Once the town hall was over, it was challenging to identify the people who had spoken. I was fortunate in that I was able to finally meet some people I have become friends with through the internet dementia support system. I met James Smith, Jay Smith, Bill Bridgewater, Sue Pinder, Kris Bakowski and joined the Chuckettes and spent every second I could with my dear friend Chuck Jackson and his daughter, Rachel.
The last day on the hill was grueling. Walking, talking, sticking with talking points, supporting information with facts and figures. I think there is a learning curve with this event and next year I would be very careful to make certain a family member could travel with me. Even having one of my son's would have been a help. They know me and know my routine. having to ask for what I needed during the week was challenging. I need lots of quiet [alone time], I need to exercise daily, I need to have great internet access so I can update family and other PWD's about the event. The Hotel this year was phenomenal, but the internet access was pathetic.

Alton Brown Feasting on Asphalt, The River Run

The entire family volunteered during Alton's visit to The Pink Palace. While I wish we had better photos, we were busy helping others take their photos, get information for the newsletter and generally helping all 400 people get their minute with him. He is, always, gracious, warm, genuine and fully attentive to each individual who comes to see him. Talented, smart, and gracious. I can pretty much guarantee he's one in a million. Sorry the photos s*ck, I swear, I took great ones of everyone else (with their cameras!) When he was leaving he asked if I was going to be there the next time he came. I wasn't sure if I had upset him! But he really was joking. ::whew!:: I was beat. Completely exhausted. Dementia is sucking the life out of me, but this was an investment. I do, slightly wish we had been standing in line and actually gotten to have a good photo with him and we all really wish he had been in a setting where he could speak to his fans. He is a wonderful and entertaining speaker. Maybe the magic fairies will let us visit the Good Eats Set when we take William to Atlanta for his next Kendo team practice? (HA!) Need more A.B. fixes? Try these: http://www.chow.com/stories/11061 (older, but still a great read; http://www.roadfly.com/magazine/14/alton_brown.1.html)

Out smarting the killer

Since being diagnosed with Early Onset Dementia two years ago, I have made some changes to my life. I alluded to them in the previous post. For the sake of others living and loving every second of life left, here's my list of changes. As always, take what works and leave the rest! As we say in the hiking world, YMMV (Your Mileage May Vary)

1. Embrace life. Yes, the illness is fatal, but you're not dead yet! LIVE
2. Eliminate stress, simplify your environment
3. Eliminate High Fructose Corn syrup (glucose fructose) from diet
4. Eliminate artificial sweeteners (even Splenda) from diet
5. Eliminate plastic containers for cooking and drinking (try this cool new bottle!)
   
6. increase cayenne pepper and turmeric in daily meals, eat whole foods, local when possible
   
7. exercise daily or as often as possible
8. Lose nasty people, negative-energy-sucking "friends" and chronic "worriers"
   
9. laugh, hug and love the ones who remain in the inner sanctum
10. Aricept 10 mg
11. Namenda 5 mg BID
12. B12 1000 mcg, B6 100 mg, Melatonin 3mg, Gingo Biloba 120 mg, Gotu Kola 475 mg, Lecithin 1200 mg, Fish Oil 1000 mg (I buy online from Vitacost, great prices)
    
13. Daily alcoholic drink, red wine, margarita, etc. (you may like chocolate better!)
14. ROUTINE, make one and keep one.
15. Support of like minded people. Join DASN and meet for daily chats, emails etc
    

USA Today article on dementing illness

USA Today has an article that features two fabulous members of some e-mail lists I'm on. Congrats to Chuck and Richard!

Beyond Memory, the BC documentary

Elaine Wright and Lynn Jackson, formerly on the board of DASNI, are featured (along with 4 other British Columbia residents with various types of dementia) in this outstanding FREE online documentary! Ever wondered about dementia? Thought or even said to me "You can't have dementia, you look so normal!" This documentary will take a little over one hour of your life, but give you a very good education about what my life is like every single day. Please watch and leave a comment here. I'm interested in what you learned and will answer any questions you have. There are some incredibly informative and insightful statements in here from the people and with dementia and professionals featured. Beyond Memory
One of the things that I truly love is that Elaine knits! She has forgotten some and still works to remember that skill. There are days that I forget how to knit. The first time it happened I was terrified. Now, as with so many other glitches in my life, I have learned to respond with patience and distraction. Often these things will come back, but panic is not going to help.
DASNI pretty much saved my life. Without the daily support of the core group, I never would have pursued or believed the diagnosis of Dementia. I couldn't have dementia, I was too young! I didn't act like "those people". Now, after years of education and acceptance. I understand that Dementia, like many other progressive diseases is a sliding scale. Early onset can be the key to stopping the degradation in its tracks for a while, slowing it at worst. I panicked when I first struggled with losses, it even looked like I was "losing my mind", but only those closest to me ever saw this. For several years I withdrew from my more public events because I could not predict when I would forget or get confused and I had been told my personality had changed. Now, with the aid of time, acceptance, coping and medication, I am once again engaging in volunteer work fairly regularly. I have even taken on a tiny part-time job. It leaves me absolutely bone weary tired. We believe it is the interaction with others that drains me. I'm not sure I can keep this job, but struggle to bring in some income to support my yarn habit and the children's expensive activities. Ginger is incredible in supporting this family of 4 in a political climate that does not recognize our family, but that's another rant.

new Alzheimers and related Dementing disorders info

There is a new ad campaign, I haven't seen it on TV, but got some good links from the USADementia and DASN yahoo groups. I do want one of the Tshirts (and I'm not a Tshirt kind of person). I can't decide if I want Voice, Open or Move though. (click the blue text that says ad campaign to see what I'm talking about).
There is a link to this site and I was shocked to see they had an entire forum, complete with a wide variety of topics, for Early Onset. It may have chat, my friend Sandy says it does, but I haven't noticed it.
for Chat I used the Fisher Center, DASN chat room at 2, 8 and 10 pm Central Time. I used to hit chat regularly. But when the boys got more activities, I found I didn't remember in time very often. I always love the core group. They are fun, witty and irreverent. We are not just a bunch of fuddy duddy old demented farts! ;)
Wish I brought my camera to Early Stage support group (third Wednesday of the month, at the AA office in Memphis) yesterday, what a fun crew. I think there are 10 of us. The director is kicking around the idea of an Early Onset group and asked me to lead it. Too bad there isn't any money in it! Heaven knows it's tight around here since I retired. Maybe we can work something out, but for now it's just in the planning stage. I wish they had a presence on the web. If you google that group there's only one hit and it's from an old server. If you have early stage dementia related disorder OR are early onset dementia disorder, call

Sheryl Ludeke-Smith
Regional Director, West Tennessee Office
Alzheimer's Association
326 Ellsworth Street
Memphis, TN 38111
901-565-0011

The world is too large and busy for me

When dementia strikes, little things like being re-routed on the way home and too many options for a weekend or a cancelled-much-planned-for-trip-to-Dallas send me to complete paralysis. So I sit, at my computer, contemplating the virtual belly-button lint and wait for the muse to give me a hint. No help, no nuturing from anybody, just over-whelmed and waiting. Oh muse, where are you? Of course a good glass of nurturing or full-bodied red wine wouldn't suck, but I won't be holding my breath.

It's official! I do NOT have a brain tumor! No signs of brain shrinkage or vascular blockage on the MRI/MRA either! So while the neurologist has no idea why I have memory loss, executive functioning problems and confusion, I do not have a terminal brain disorder. WHEW! Having a celebratory glass of champagne. AND I had started some chicken stock for comfort food after the MD appointment. I ate some and had some chex mix.

I continued to knit on the endless sock-weight purse from Knitpicks yarn. Ugh. I am so excited about Max's BrownSheep Superwash Bulky Blue Riff jacket that I emailed BrownSheep for other colors in their seconds bin :) Unless Denise is going to visit her relatives again soon and wants to run another mercy mission. Honestly, without her hard work, where would my stash be?!!! :::hugs to Denise!:::

Tomorrow morning is the endocrinologist and I will attack him with information that his Synthroid Rx has made my symptoms WORSE! Ugh!@!!

It's got to be the Synthroid. There's just no reason I should be so sick! Memory problems are one thing, but this is ridiculous. I was up until 3 last night. Not tired in the least. Thank heavens I knit. I kept putting my shrug down, saying I was going to go to bed, but I felt horrible. I had eaten some crackers and since they didn't upset my stomach I'd have crackers and some of my garrrrrlic dip. Bad idea. Was sick for hours and gradually wasn't sick, but felt horrible. I didn't even get my shrug finished for all that :(

Running some errands today. Max wants to get a few new books. He wrote some more thank you notes last night. William has lost computer for a month because he cut a small square of fabric out of my FAVORITE tie-dyed rayon ribbon dress (Fawn & Tino designs) to do Voo-Doo! Yep, big brother-the-babysitter read some silly book about voodoo when he was waiting to meet Alton Brown in November. Now why he mentioned it to little brother last week is beyond me, but he did and William took it upon himself to make a voodoo potion. I noticed the missing fabric in the hem yesterday and it would be correct to say that it did not go smoothly when I asked William what happened. Eventually he told the truth, we took his computer game RuneScape away from him for a month. You'd have thought we were depriving him of air.

enough drivel. Off to call my mom and tell her I have a neuro appt. Thursday so she cancels her plans to come the following week.

I did it. With Ginger and 2.5 mg Xanax, I survived an enclosed MRI and MRA for what seemed like a zillion hours, but was probably more like 1.5 total. And as an added bonus, I semi-recovered from my deeply drugged state long enough to eat an entire entree for dinner. That was my first full meal in weeks. Of course I felt bad later, but for about 2 hours it was fine. Guess the Xanax wore off an my stomach woke up? hee hee

So today I called and begged to see the neurologist earlier than 9/1. Said what ever it is that's going on with me is interfering with my daily life and I can't afford to go to the ER (which was the nurses suggestion). After telling her I would come to the clinic and sit all day to get worked in, she suddenly found an opening Thursday at 2:20! Amazing! Now, the anxiety begins all over again. Maybe this is all in my head (as in psycho-somatic), maybe I'm craving attention! OMG. But the nausea continues. I remain apathetic, confused and can't organize sometimes and life goes on. I am relatively certain something is wrong with my brain/body. I am also relatively certain it's not life-threatening. This will all go away and my life will slowly return to normal and we will barely be able to recall it five years from now :)

BEACH. We leave for the BEACH in a few more weeks. Blessed sun, sand, salt and silence. Now if the construction weren't going on in the background we'd have the later, but alas, the island is still recovering from the wretched Ivan who took our month at the beach and reduced it to 3 weather-channel-obsessed-days and our beach home to nothing more than pictures and memories. And, irony of ironies, guess what my Neurologist's name is? Yep, Ivan. From the Ukraine. Gotta love fate. She's got a wicked sense of humor.

So, hope for a solid diagnosis on Thursday. I don't care what, just a definitive diagnosis. Being the bizarre knitter that I am. I have decided to "reward" myself after Thursday's appointment with a hat made from this http://tinyurl.com/9rqpj or this http://tinyurl.com/djrxf because this yarn begs to be near my skin. And after enduring months of waiting (Ginger says this would have been "over" long ago if I whined more) I think I deserve a piece of decadent luxury like a cashmere beanie or even :::gasp::: a small stole. What do you think?

Coca Cola is a miracle. I met Mikey at Molly's for a comfort drink as he'd had a challenging and demanding day. After 1 1/2 huge glasses of coca cola (in 2 hours) I came home and had a few crackers and CHEESE and I feel perfectly normal. ahhhh Wonder what is in it that works so well? I got a 50/50 store brand of cola and it's not as good. My mom says cola syrup is the key. I'm wondering where I can get cola syrup these days. It used to be a drug store staple...

More labs on Friday and Monday is the l-o-n-g awaited MRI/MRA, though I have to wait until Sept. 1 for the results :(

I am now officially so sick of being nauseated that it's making me sick. Yes, that's a brilliant example of circular logic and, trust me, I am going in circles. Either I'm nauseated and have no appetite or I eat a tiny bit and as soon as it hits my stomach I feel horrible and am even more nauseated. Coca Cola is my friend. For some reason diet coke doesn't do the "trick" like regular coke. :::sigh::: No pity party here, just some frustration. The headaches I can live with. The nausea is annoying. I work pretty hard at finding ways to get food in me, though I certainly need to lose weight. I know that losing weight through virtual starvation is not healthy. I average 1/2 pound weight loss a day. Some days I manage to hold steady or even gain a pound only to lose ground the next day. I am counting the days until my next appointment.

I had a brain storm the other day. What if this nausea is a side effect of my meds? Hmmm. Now I know I had nausea way before they started me on the meds, but it *had* for the most part, stopped. Now it's my constant companion. The kids are being great. Not really focusing, but noticing if I appear to have a headache or be nauseated. Ginger isn't commenting again. Not sure why. I think she's annoyed that I'm not going to the ER. I know she called my attorney and asked her to draw up POA and DPOA. She did this without my consent. So of course I don't have them and I haven't signed anything. It's a good idea to have these pieces of paper in order no matter what's going on though. Especially given our extra-legal status.

Staying slightly busy seems to help. Knitting works sometimes, TV works a bit, video games with the kids work a bit, going to work helps after a while, but not if I'm there too long. 3-4 hours seems to be my limit. I have curtailed my volunteering for a few weeks. Guess it's time to get back in the groove.

If you found this blog, you're either smart, curious or lucky. This is a top secret blog. I have decided to keep it linked to my profile. My friend Karen tipped me off that she'd found it 2 weeks ago. I continue to hope on some small level, that there is NOTHING wrong with me. Just some short, okay, not so short, glitches in behaviors, memory and executive functioning :) However, if you are reading this and you actually know who I am, don't expect me to discuss this with you openly. Our children do NOT know specifically what's going on. They know I'm sick. They know we're doing less for now. They know I have headaches and get sick. Max has noticed I've lost weight. (I have been able to eat about once a day, generally later in the day without getting sick.) Nobody knows what's causing this so I don't have anything to tell you. I will tell you that I don't need anything, no help at all right now. We've slowed down activities and I'm teaching the kids to navigate when we drive, along with how to call for help on the cell if need be. I prefer to have them with me, we're trying to enjoy time without focusing on health. Ginger has shown sincere concern and is more demonstrative. That is a wonderful glorious thing. As soon as we know something definitive, we will be open with friends and family. Until then this is top secret so pretend you didn't read it!

For a long time my confusion and memory problems were a closely guarded secret. As the symptoms become overwhelming, I shared with my wife. My wife who can't "do" nurturing. Who only lives in the tangible universe. My wife who is scared she "can't do it" (care for me as my mind degrades). Well, my fear is that my needs will be unmet. I have finally shared my fear of having a degenerative disease with no cure that will cut my lifetime. Shorten the years with my fabulous kids. My wife won't be able to "be there" for me. She's struggling with the possibility of a diagnosis. Heaven knows what she'll do if/when it's confirmed.

And have you tried to "google" dementia early-onset? Let me just say there are no easily found support groups or resources for a woman diagnosed with dementia in her mid 40's.

but life goes on... I will live the days I have. I will try, like hell, to not let my confusion and personality changes limit my life.

After over six months of trying, I finally had an appointment with a neurologist and the results were exactly what I feared. Aside from many tests, none of which we can truly afford, the main diseases he's following up are

1. Dementia
2. Brain Tumor
3. Stroke

I've been fairly stable the last few months, no major declines and I've even regained the ability to recall the day and organize the big re-current activities of most days. I still struggle with order and making decisions. It's called executive functioning. That would be like when I drove all over decided where to go get milk for Max's bowl of cereal. And Ginger says she and one of my closest friends and confidants both have noticed a personality change for the last 7 months. Joy. There's not a lot of information about these diseases in someone my age. Apparently I'm supposed to be in my late 50's and have a history of hypertension.

So I'm waiting again, for more bills and more tests and yet another appointment. I hope they find nothing!

secrets

Sometimes when you knit, mistakes can escape detection until you're about 3 rows past them. My life feels like that. There are some serious glitches in my memory and if there's nobody to catch it, then I've escaped except that I know what really happened. I sure hope this next MD visit lends some actual insight into my supposed illness. Brain tumors and dementia aren't something I really know how to deal with. I'm young and have a good marriage (okay, a sometimes great and sometimes less than good marriage) and two wonderful kids. This can't be happening so I keep waiting for the memory issues to just go away...