Saturday, December 18, 2010
Last Thursday my Mom and I went to the annual Alzheimer's Association Holiday Party, and although I was only there for about 45 minutes, I'm really glad I was able to go. (Holiday traffic was so horrible, and I told Megan not to worry about driving all the way down there for 45 mins, but luckily my Mom was in the area, so I had a date.) My main goal was to meet Patty Moulton who is the VP of Outreach and Advocacy. I think I mentioned before how I would like to get more involved with education, raising awareness, and public speaking and this was the perfect opportunity to meet the right people.
We spoke with Patty for a few minutes and exchanged contact information, so I will keep everyone updated with new developments as they come.
Tuesday, December 14, 2010
This legislation would create the country's first national office for government efforts to treat and prevent Alzheimer's disease. Within the , the National Alzheimer's Project Office would coordinate and oversee federal research on Alzheimer's disease to develop a plan to combat the disease and to eventually develop a cure.
AND it will not require any additional federal spending! Although I wouldn't mind a little extra federal spending if it meant finding a cure for Alzheimer's because the cost of Alzheimer's care in the future will far out-weigh the cost of research now.
I also got an email update about the Rose Bowl Parade Pfizer/Alzheimer's Association float. Here is some more information about it...
The first wave of baby boomers will begin turning 65 next year, advancing into the age of greater risk for developing Alzheimer's. The Alzheimer's Association and Pfizer have joined together to raise awareness about the disease by urging Americans that It's Time to Face Alzheimer's. Visitors to an interactive website can upload photos and share stories about their Alzheimer experience as part of a Faces of Alzheimer’s mosaic. This awareness effort culminates with a featured float, called The Boomer Express, in the nationally televised 122nd Tournament of Roses Parade on New Year's Day.
I will add a link to the right of the blog so that people can share their stories on the float and upload pictures just like I did!
In the meantime, Dad is doing great! Megan and I each go once a week right now and that seems to be just fine with him. We aren't getting numerous phone calls and when we visit with him, he seems happy and content. It's so nice to have this little break from the drama, although sometimes I almost feel like there's something missing in my life because we're not rushing to Whittier to pacify Dad or scheduling our whole week around him.
When Megan went to see him last week, she brought her dog Izzy and everyone loved spending time with a dog. This one lady who wears a moo-moo every day, loves animals, and every time we bring Izzy, she says, "There's nothing like a pet. There's nothing like an animal in the family." EVERY. TIME. Sometimes she will repeat herself in two minute increments, but it's really sweet and we can tell she misses having pets.
There's another woman that lives there who always asks us, "Have you seen Lolita?" or "Is Lolita over there?" We always figured this was some person from her past, but apparently Megan met Lolita the other day -- she is this woman's care-taker. Who would have known. It's difficult to know when these residents are talking nonsense or if they are speaking about reality.
Megan had a very funny and blog-worthy quote from Dad to share with everyone... she asked Dad the other day , "Isn't Veronica nice?" (Veronica is the Activities Coordinator.) Dad's answer was priceless.... he said matter-of-factly, "Yes, she keeps me with Jesus." Hahahaha!!! Now, most of you know my Dad isn't a religious man, and he always used to say, "I don't have to go to church, cause I'm perfect." So, we found this hysterical.
During my visit a couple of days ago, Dad was talking about his brother Doug and then asked me politely if I had a brother. I said, "Kind of." I do have a half brother (my Dad's son) but I have no relationship with him, so that is why I answered that way. Anyway, I told Dad, "You know, David. Remember David and Kelly." He repeated David, but pointed to himself. He couldn't comprehend that he has a son with the same name as himself. He doesn't remember he has a son. Most of the time, he doesn't really understand that he's our Dad either. He knows we have a special relationship, but he doesn't understand the extent of that relationship.
Anyway, it's nice to see Dad feeling like he is at home. He's happy and that's all a girl can ask for, right?
Below is a picture of Dad in the Christmas Spirit!
Friday, December 3, 2010
We opened with a dramatic rendition of "Diamonds Are A Girl's Best Friend" and our program continued with Peggy Lee songs, Rosemary Clooney, Frank Sinatra, Judy Garland, and more. Once we started singing and dancing, I instantly saw faces perk up in the audience. During some of Alexis's solos, I could hear a lady in the front row say really loudly, "She's really good." And then she repeated it louder because the lady next her didn't know what she was saying.
I got some laughs during "Fever" when I went over and sang to Dad, "oh, Daddy oh don't you dare... He gives me FEVER!" They weren't laughing at me per say, I think it was Dad's reaction... because he was really into that song and was making some funny faces. Oh, and he practically sang a duet with Alexis in "Cry Me A River" because he knew all the words to the first verse. As you can see in the pictures, we also got Dad and Tabitha up to dance a couple of times throughout the program when we had long interludes during the songs.
I do have to mention one incident. During Alexis's song "Someone to Watch Over Me", a very grumpy gentleman started yelling in the hallway. The cute ladies in the audience kept trying to shush him because he was ruining the music. Suddenly while Alexis is crooning away, this gentleman walks across the stage yelling at the caregivers. This upset most of the people, and we ended up pausing the song. Dad even stood up because he was getting angry at this guy. There were definitely some moments of confusion and anxiety, but he finally went out in the garden and we started up once again. Despite that one little incident, everything went smoothly and not only did the residents have fun, but Alexis and I had a BLAST!!!!
Of course, we volunteered our entertainment for Whittier Place and it was a great way to test out our act. I can't wait to do it again. When I went back a few days later, some of the residents (including Dad) even remembered the performance and said how much they enjoyed the songs and dancing.
I added a link to the right to our Sassy Songbirds Blog! Please check it out!
Wednesday, November 24, 2010
His medical coverage consists of the VA and Medicare Part A - both of which typically don't cover Emergency services. Dad's bills from his run-away incident on April 11th add up to almost $8000 including the Ambulance Ride. The VA may cover these expenses if the incident is associated with an ailment that they have been treating him for (like Alzheimer's). Since nothing happens very quickly through the VA, Collections is now calling me about his Ambulance Bill, but of course they won't tell me anything until I fax them the POA... WHICH I did two weeks ago, but they never got it. So, I'm going to fax them again.
I am also faxing a letter to Dad's mortgage company. His mortgage is currently paid through an automatic payment, but since he is selling his mobile home, it is also being paid through Dad's escrow... so we're double paying. They need a letter signed by me to discontinue the automatic payment.
Furthermore, I've been dealing with Dad's home insurance as well! Now, with this particular document I was able to scan and email it back, so that saved me a fax, but I spent almost an entire hour trying to get the correct person on the phone that could answer my questions.
MIA (missing in action):
Lastly, I'm supposed to get another check for Dad from Morgan Stanley so that he can pay next month's rent, but I haven't heard back from them. They're usually very prompt, so I'm not sure what is going on with that. I know things are tough around the holidays, but I gotta say this is a strange one. We need that check before the 5th of next month to pay his rent!
Next week we are meeting with a Lawyer who specializes in Elder Law so we should be getting a better idea on how Dad is doing financially and what we need to do to make sure that when his money runs out, everything goes smoothly. We estimated that Dad has about 10 more months of Whittier Place before he can't afford it anymore... but we'll know more after we meet with the Lawyer.
Tuesday, November 16, 2010
Upon arriving, I was greeted by staff members who said my timing was perfect because Dad wouldn't participate in the exercises due to the fact that he wanted to talk to me, so he had wandered over to his room by himself. When I saw him, he was in the middle of buttoning up a short-sleeve Hawaiian shirt that he had put over his long-sleeve sweater. He looked ridiculous. I guess he thought that would keep him warm? (don't worry, I took it off of him)
Anyway, his room was locked AGAIN. I'm not sure why they keep locking it and I told two people today to unlock it because it makes him upset. After depositing the Hawaiian shirt in his room, we made our way outside to the garden because truthfully, I'm so obsessed with the perfect amount of sunshine that pours in through the trees and the peacefulness of sitting on a bench and looking at the flowers (although when Dad's anxious, he can sometimes ruin the peacefulness).
Dad says the usual: he's locked in, needs a job, and wants to see family. Then he seemed concerned about me and said, "I couldn't find you. I was thinking I hope you didn't get hit by a car or puked a monkey." YES! That is what he said. Puked a Monkey. That has got to be one of the most inventive and odd things Dad has said to date.
We were just talking about random things, when Dad asked me, "Are they going to do that here?" (pointing to Whittier Place). And I thought... do what? What were we just talking about? Because the question made no sense. Should I ask him to elaborate? What should my answer be? What will make him happy? So I tentatively said, "yes...?". Hallelujah! That was the right answer because he was so happy and in awe of the entire place. I have no idea what he was so happy about, but whatever works. He even said that he wanted to stay at Whittier Place. So, you can see how I was a "Dad whisperer" right?
Later I told Dad, "Okay, you want to go somewhere, that's fine, but you don't have a car, so you can call up Me or Megan and we'll take you. No problem." Then Dad said, "I used to have a car. At my age I probably can't get one? Okay, well that's probably the right thing to do." He was laughing and joking around and saying that he was so happy.
Before I left, we called Dad's brother Doug and they had a great conversation. Dad is pretty adamant about seeing Doug, but I'm not sure they'll ever get to see each other again. Doug doesn't really travel much and it might be too difficult to take Dad on a trip to northern California to see his brother who we have never met. It's kind of awkward.
On my way out, I dropped him off at the activities room where everyone was sitting around in a circle. Suddenly, Dad started dancing and singing along with the song,"Love and Marriage", that was playing in the background. When I left I could hear them all laughing and teasing Dad. He loves that stuff.
Hopefully my conversation with Dad today keeps him in high spirits the next couple of days.
Friday, November 12, 2010
You and your team put a BIG smile on my face this past Saturday. Your team sign was so creative – and your team spirit was contagious. What a great group of people you have put together, Kristen. Youthful and full of life.
You have moved this cause forward in a way you can’t imagine.
Upside to Dementia has a great deal to be proud of. I am not sure if you understand the impact you have made – but I want you to know it is immense throughout our community. I wanted to personally thank you so very much for your support for this Memory Walk. It is people like you and all the people on your team that will bring us closer to a day when Alzheimer’s Disease is but a memory.
You and your team have raised $2,100 – that is no small amount. You are helping to serve the people in this community affected by this cruel disease – one dollar at a time. Our donation site will be open until November 30th –keep up the amazing efforts –there is still time to meet your goal of $3,000! Soon after that date, you will be receiving your certificate for your incentive prizes for all of the money you have raised.
We have only begun to reach out to the community in Huntington Beach and the surrounding areas – but with people like you behind our efforts, we know we can succeed. I would love to hear more about what helped you succeed and how you are connected to the cause.
Thank you, Kristen, for all you do for this cause. We need you support and we are so lucky to have it.
All my best to you and your team!
Thank you again to all our wonderful friends and family! We love you! Here is the official picture taken from the walk!
Sunday, November 7, 2010
I'm kind of crazy and spent almost 3 hours making a poster for the walk. (There was a poster contest and I still don't know who won, but it should have been us!) And, no, I don't have that much time on my hands, and it's one of the reasons I'm still so tired from the last few days.
What made the poster more special was in the inclusion of names that our friends and family donated in memory or honor of. Over the past three months, I didn't feel too annoying asking for donations because half of the donations weren't made for just my family... half of the donations were from people who have a loved one with Alzheimer's. I say it every time, but I'm always surprised at how many people are affected by this disease. So, we didn't just walk for my Dad and for our future, but we also walked for....
Lucy Mitchell, Faye Taylor, Ruth Sciumbato, Sophie Barnes, Gail McGinty, May Henderson, Jim Richardson, Ada Henderson, Bob Henderson, Katsuko Elegino, Richard D. Meriwether, Grandma G., Vincente Miramontes, Harry Manning, Karen Herschberger, Mary Gilligan and more.
I've felt so empowered the last few months fund-raising and being a part of the Alzheimer's community, and now it's over until next year. (Although, that's not true at all.) Megan and I are definitely still involved with everything to do with Alzheimer's because of good old Dad and I have to say I've become quite passionate about the cause if you haven't guessed by now. The numbers and statistics don't lie and researchers are struggling to find which route to take in finding a cure because of recent set-backs (although there have been break-throughs on diagnoses of the disease). I really think we're going to be seeing and hearing a lot more about Alzheimer's in the media in the next few years; in fact it's already starting.
Again, I want to thank everyone for their support and for making us feel less powerless about this disease. I also want to thank my friends who walked with us. Who knew a bunch of twenty-somethings would care enough to be walking in an Alzheimer's walk. We hope next year's group can be even bigger!
Happy 71st Birthday Dad (on Nov. 4th)!!! Best of all Dad's oldest friend Mike O'Rourke was in town to celebrate with us. And even better, Dad was wearing his shiny, gold, skull and bones pirate necklace from Halloween, which was 5 days earlier. He kept saying, "I wasn't sure about this when I first got it, but I think it's ok." He had been wearing it all week!
While everyone was doing Zumba, the four of us had our own little celebration with balloons and presents. Megan and I made Dad a birthday poster and bought him a shirt that says, "Who Farted" which he thought was a hoot, and Mike got Dad a CD of Ella Fitzgerald and Louie Armstrong.
Dad loves to open presents. Every year at Christmas, he would be so dramatic while opening his presents; shaking the box, guessing what it was, tearing each little corner of the wrapping... we usually ended up yelling, "Dad!!!!! Just open it!" So, of course that's what he did while opening his birthday gifts -- Lots of jokes and funny faces too. After unwrapping, we decorated Rice Krispy treats with icing and sprinkles and listened to the new CD.
After Zumba was over, the rest of the residents filed into the activity room to celebrate Dad's B-day. I've mentioned the birthdays at Whittier Place before, but I will reiterate how special the staff makes everyone feel on their birthday. They baked a chocolate cake with a layer of Bananas in the middle and then drew fish on the side of the cake with the colorful icing we brought. Dad had a blast!
When we all asked him to make a wish, he took so long to think of one and the Activities Coordinator was holding this heavy cake in front of him for at least 30 seconds while he thought of a wish. Then after figuring out his wish, he had trouble blowing out the candles, so he started to take his teeth out because he thought that would help the situation. Lucky for you.... I got it all on video but we're having a difficult time uploading it, so I will share it another time.....
On a side note, we're always told when dealing with Alzheimer's patients not to reason with them too much. Reasoning and Rationality don't really work with this disease... but there are exceptions to this rule. The day after Dad's B-day, I got a call from Whittier and he was anxious. Mostly, he wants a job. I agreed to help him find one, hoping to calm him down a bit, but he kept repeating how much he wanted a job, so I responded with this statement: "Well, I don't know if you know, but our country is in a recession and unemployment is very high. There are a lot of people who don't have a job and it's really hard to find one. So, we can try to get you one, but it might be more difficult than you think." And he said, "Oh, I didn't know that. Okay." It made perfect sense to him. Sometimes I think he just wants to be talked to like a normal person.
Remember when I said that Dad gained 4 pounds since he last went to the doctor and we didn't know why? Well, Tabitha (Dad's gf) has informed me that she gives him half her food because she never finishes it. Now we know.
Monday, November 1, 2010
Sunday, October 31, 2010
Last week, I worked the Govenor's Women's Conference in Long Beach. Speakers ranged from Maria Shriver to Sandra Day O'Connor to Michelle Obama to Oprah and there were numerous booths from many organizations and businesses. I worked the booth for Intuit -- most known for Turbo Tax and Quicken. However, I did get a chance to make the rounds and I walked over to visit the Alzheimer's Association booth where I shared my story and got my picture taken in front of the Alzheimer's board. (I look a little dorky because I'm in my long sleeve Intuit shirt.... :))
The Alzheimer's Association and Pfizer are teaming up to raise awareness of Alzheimer's (particularly targeting the Baby Boomer Generation). On New Year's Day, look for the Boomer Express Train, the first-ever It's Time to Face Alzheimer's float in the 122nd Rose Parade. Apparently the stories shared at the booth (including mine) will be displayed on the float along with our pictures. We'll have to keep an eye open for the float. New Year's will be here before we know it.
I also wanted to share a link to a fabulous article from The New York Times -- Finally an urgent, informative, and succinct article about Alzheimer's. Thanks to Remy for sending me the link. I was so disappointed with TIME magazine last week and their cover story... it was so boring...
The link to the NY Times article is attached to this blog. (To read the article, NY TIMES might make you register with them, but it's free... they only need your email and a password.)
Also, we're less than a week away from the Memory Walk and we've raised $1925.00!!!!! We'll easily get to $2000. If you would like to donate or join our team, the link is to the right of the blog! We'd love to have you there.
Whittier Place was putting up some new pictures on their walls, so they gave me a few of their old pictures that featured Dad. Both were taken within a month of two of him living there... you can tell his face looks fuller. Whittier place has the best activities... for Cinco de Mayo they had pinatas and virgin Margaritas! The other picture is of Dad planting one of his own Sago Palms in their garden.
How much do I love my Dad? Well, I went to Party City to find him a costume two days before Halloween. If you know what Party City is like before Halloween, then you know how much I love my Dad. That place was insane.
I ended up getting him some Pirate accessories and Blake had a red shirt for him. Whittier place was putting on a murder mystery with live entertainment and cookies and treats! The place was decorated with Spider Webs, Flying Ghosts, Blacked out Windows, Strobe Lights, Music and we ended up dancing to "The Monster Mash", "Purple People Eater", "Old Devil Moon", and "The Addams Family". We had a blast singing and dancing to all the songs. As you can see from the pictures, he had a pirate hook in his hand and his favorite joke of the day was, "I'm a hooker!" Hahahaha. Good old Dad.
Afterwards, Dad was getting grumpy and anxious about his living situation-- the usual complaints and then the conversation turned to Paula and he asked, "Do you know Paula?"
"Yes, Dad, she's my Mom." He's so worried that she is out there looking for him. Telling him that she's out of town doesn't really work either. The day turned from delightful to annoying in 5 minutes time. I did what I could to pacify him and then got out of there before he got more anxious.
Below is a video of Dad dancing to the "Monster Mash". Right at the end of the video, Dad's girlfriend Tabitha comes over to start dancing with him....
Friday, October 22, 2010
"As a country we spend $5.6 billion a year funding cancer studies, $1 billion a year for heart disease.... and $500 million to study Alzheimer's. Yet what is going to get most of us in the next few years is Alzheimer's."
TIME's article wasn't the most informative or exciting, but what it did do was raise awareness, explain new avenues that scientists are taking to combat the disease, and give Hope that maybe someday Megan and I won't end up like our Dad.
Some days I feel down about the slow progress being made against the disease. Scientists have 30-35 years to find a cure or a concrete way of preventing Alzheimer's before I start to develop the disease. Is that enough time? (The disease starts forming long before symptoms even occur, so it's safe to say I could be 60-65 years old when it starts to develop. Researchers say that the best time to tackle the disease is at the very beginning stages or before.)
On the other hand, big strides are being made with early detection and I am confident that with the raised awareness about Alzheimer's, more research will lead to some promising discoveries. Furthermore there are ways of slowing down the disease that my Dad didn't really partake in (one reason for developing the disease so early).... keeping the mind sharp with enriching social relationships, stimulating the brain with games and puzzles, and keeping your body physically fit.
One Poll that TIME featured asked (paraphrasing a little):
What would you prefer if they were diagnosed with Alzheimer's?
37% said they would like to be placed in a home for Dementia Care
36% said they would want their spouse or children to take care of them at home.
That 36% percent upset me so much. I mean, I got really mad. I don't know who the participants of that poll were, but knowing what I know now, I would NEVER EVER subject my kids or husband to taking care of me full-time in our home. I think most care-givers would agree with me. It's one thing if that's the decision made by the family members, but there are facilities that are specially equipped for dealing with Alzheimer's patients. Those facilities know the 'tricks of the trade' per-say and I am constantly impressed at how well my Dad's care-givers handle him. They are doing a much better job than Megan or I could do and he's pretty happy. (Obviously, money can be an issue and a reason why many people don't move into a facility.)
Ending on a light note... Megan informed me after the Doctor's appointment today that Dad gained 4 pounds!! Yay!! Dad was so sweet to her today and reached over and brushed her face with his hand. She said that he is newly obsessed with Paula again. And then still on the Paula topic, he said to Megan, "I didn't know you had a Mother." Haha, what did he think? That she was an alien life-form with no parents?! Just kidding. It's just so funny when he says things like that.
Thursday, October 21, 2010
It's been a while since we've had a naked episode.... so just thought I would share my latest one.
Visiting Dad the other day was wonderful (despite the nakedness). 10 days had gone by since the last time we saw him. Miraculously, we only got one phone call from Whittier when we were on our trip. He also got a new roommate which didn't seem to ruffle his feathers either. It's so strange how easy going he is at the moment considering the past two months were riddled with annoyance and frustration on everyone's part.
I found Dad sitting next to his girlfriend Tabitha and finishing up lunch. Their banter is something out of "I Love Lucy" and I just can't help but laugh. Slap-stick at times. Tabitha was telling us how she knew Elvis back in the day and that he was such a brat. My first instinct would be to think that she is lying, but I can never tell with her because so many things that come out of her mouth are true and actually make sense. She is really musical, so it's possible she jammed with him back in the day in Memphis.
Normal conversation. That was the theme of our visit. Dad and I chatted like nothing was wrong. Like he didn't have Alzheimer's. His concentration and attention to detail that day was pretty astounding considering you can usually have a conversation right in front of him and he won't pick up any of it. One thing he was fixated on was taking a shower. I kept telling him that he didn't need a shower in the middle of the day. Then he insisted on changing his underwear because they felt weird. It's a big pain to get his shoes off, so I didn't want to do it, but it turns out that the underwear he was wearing were about 4 sizes too big for him and were hanging halfway down to his knees. Makes sense why it felt so weird. I don't even want to ask the question that you are all thinking. Who's underwear is it? Let's just let that one go for now.
I left him for a couple of minutes while he was getting dressed to go find toe-nail clippers and when I came back he was standing in the shower in his underwear holding the detachable shower head with the cold water running. Okay, Dad. If you really need to shower then lets just get it over with.
Since he was having such a great day, all I had to do was point and shoot the water at him while he scrubbed. So, it wasn't that bad, but seeing my Dad naked wasn't number one on my list for the day. I think I'm kind of getting used to it actually. It's good to see him in that state every now and then so I can make sure he doesn't have any more rashes or bruises or anything.
His feet are another story. They're gross. The nails are all yellow and have started looking gnarled. Thankfully the podiatrist is coming by this week, so we're paying the $25 for his feet to be looked at. (Hopefully the nails will get clipped too, because they were getting freakishly long. Shouldn't his care givers be taking care of that?)
Doctor's Appointment this Friday to get some prescriptions renewed. Hopefully it goes well.
Saturday, October 9, 2010
It's been a great week for Dad. Something I said last week led him to believe that he owns the place he lives in and that everyone works for him. He then continued to concoct a story that he inherited the entire place from his Dad and that it's his job to take care of it. THIS HAS MADE HIM VERY HAPPY and much less anxious -- whatever works!!! I didn't get one call from Whittier this week and the timing is great since Mom, Megan and I are leaving for five days to New York.
My Aunt Lisa came to visit Dad today with us and there was a big Oktoberfest celebration with authentic German dancing and Root Beer. He was in great spirits and started dancing so ridiculously during The Chicken Dance. We had all formed a circle when he broke free and started letting loose in the middle of the circle all while wearing this big floppy hat... I could NOT stop laughing.
The video below shows some of his great moves... too bad it cuts off right as he was about to enter the circle....
Thursday, October 7, 2010
I will always remember seeing Ruth wave at us from her kitchen window while we played in our backyard. And during this time of year she would start making her zucchini bread and persimmon cookies. Let's not forget how much Megan loved the chocolate mints that were always offered when we came over to visit. It was like having a second set of grandparents right next door! Ruth was such a bright presence with a warm smile and could always make us giggle.
Most of all, Pete and Ruth were a wonderful example of a Happily Married Couple - Married for 61 years!!!! Their love for each other was apparent in everything they did including an emphasis on family - 1 Son, 1 Daughter, 4 Granddaughters, and 1 Great Grandson. Pete and Ruth's family is relatively close by, so I'm sure that Pete will eventually be okay as he stumbles into this new part of life. He's also got a great neighbor who doesn't mind sharing a slice of pie and coffee with him. ;) (my mom)
We couldn't have asked for a better neighbor and friend for 20 years. Goodnight Ruth. You are free from Alzheimer's and although you will be missed, we all now have one more Angel watching over us.
Monday, October 4, 2010
Another person I need to thank is Wendy from the VA in Austin. I am still dealing with all these hospital bills from when Dad had stitches after running away in April. The total amount comes to around almost $10,000 including the Ambulance Ride. Since Dad only has Medicare Part A and goes to VA for everything else, he qualifies for assistance from the VA to help cover the cost of those bills. I spent hours sending bills and information to the VA only to be written a letter saying that we were rejected because we were missing papers. Wendy was my savior last week. She told me what forms she needed and when the hospital billing office played dumb, she PERSONALLY called them and requested all the correct paperwork. As slow as the VA usually is with everything they do, Wendy made progress happen within in 30 minutes. I could not believe it. That was just the first step in getting these bills taken care of, but at least it's a step in the right direction!
If you read yesterday's blog, you know that my Dad had a special visit from his Brother Ron and his wife Linda. They drove down from Oxnard to see Dad and had this to say on my Facebook page... "We r with Ron's brother David and he still has a great sense of humor and is good natured. Glad we r here."
Instantly I was happy and then I felt incredibly guilty and almost wanted to cry. All I've been doing is complaining about how annoying Dad is lately, but that message from Ron and Linda really got to me. Considering Dad has Alzheimer's and is frustrated and confused by his state of mind, where he is living, and the loss of control in his life, he really handles it pretty well most of the time. I need to remind myself that when I have 'Dad overload' to sit back and reassess the situation.
Obviously Ron and Linda only witnessed a few moments of Dad's life yesterday, but they could still see all of Dad's good traits shining through this disease. I know that Megan and I get the worst part because Dad needs to complain to someone and since we see him so often, we get the brunt of the complaints. I need to remember that Dad is struggling as much as Megan and I are with this disease. I'm sure he's scared sometimes too.
Wanted to share this picture of Dad with his brother Ron from yesterday.
Sunday, October 3, 2010
Both Megan and Blake made the comment that Dad's short term memory seems to be getting even worse. We would spend ten minutes calming him down and then LITERALLY one minute later or less, he would forget anything that we said to calm him down and we'd be back at square one. That's probably the worst part of the phone calls because they only call when he's upset and it's our job to calm him down.
We got a nice surprise today though. Dad's half brother Ron and his wife Linda who live in Oxnard and are making the trip down to see Dad. Unfortunately, I didn't get to see them, but I spent some time making sure Dad knew who was coming. Once he understood who they were, then I would tell him that they were coming today. He would get incredibly excited and shocked and then completely forget. This process was repeated at least 4 times in ten minutes. It kind of made us laugh after the fourth time of telling him because he would act so surprised and shocked every time. (The last time we told him, he actually jumped up and down like a 4 year-old.)
The strangest thing about our visit today was that Dad knew something was wrong with him. He asked me "Is my brain going?" and said, "I could walk down the street with you and I wouldn't remember." (That one gave me chills.) He even said, "Maybe I bumped my head because something is wrong in there." I wonder if a lot of Alzheimer's patients have revelations like that.
He was completely frustrated about the fact that something was wrong with him and it was surreal sitting there with him and listening to him talk about it. Blake was really cute because he told Dad, "You're being too hard on yourself" and Dad looked at him like he was the smartest man in the world. He felt a little better after that and really liked that Blake was there. It's good for him to have another guy around.
We also talked a lot about Dad's daughter Kelly and that's when we took the picture that I posted in the blog. Overall Dad was in good spirits during our visit, but the phone calls that I get are so bad that I always think our visits are going to be the same way. That's usually not the case though. He was still flirting with the staff members... kissed one lady on the cheek, tickled another one on her shoulder, kissed the hand of the lady serving him lunch, asked one lady if she had a sister for him. He had everyone laughing as usual. Why can't you be in that mood all the time Dad? I think that's why the staff can tolerate his lows because his highs are so sweet and funny.
Wednesday, September 29, 2010
Dad told Mom, "It's been years since I've seen you." Well actually only about 4-5 months, but that probably feels like years to him. When we asked Dad to show us his room, he kept handing Mom pictures of me and Megan like a proud Dad. I do think he understood who she was and that she was our Mom. He called her "The Mom" at one point. And, while we were sitting outside, he looked at her in disbelief and said really loud, "Paula!? I Love You.!" (and he elongated the 'o' in Love) We all laughed and Mom said, "Well, thank you, how nice." :)
His mood was great and we took the opportunity to get a picture of the four of us - reunited. I also attached a photo of the four us around 1995 and the one of us 15 years later. A lot has changed.... I always find myself thinking about how different things are now... It doesn't make me sad or happy... I just find it interesting.
We also got a hold of one of Dad's family members!!! Yay. We may be able to go see Grandma Olive soon. Dad will be extremely happy about that.
I got an email from Alzheimer's.org and there was an article about taking a positive approach to Alzheimer's. And I thought... hey! We do that! All I have to say is if Dad can stay as happy as he has been the last couple of visits then we'll have no choice but to be positive. Of course I know there are bad days lurking, but Thank God they aren't all like that.
Here is a passage from the article that really resonated with me...
"We live, unwittingly, in a world of assumptions: that people will make sense; that they will do certain things; that we agree about time and place; that we can understand and be understood. But when all that unravels, where are we? My answer for Hob and me would be that we lived in an open, shifting, spacious reality where everything was undefined and totally unpredictable. "Wasn't that the way reality is anyway?" you ask. No, this felt quite different. This was a totally new experience. When I was rested and in balance, it was compelling, even exciting because it was so alive and immediate, a perpetual wake-up call to live wholeheartedly in the moment. Meanwhile, it came to me as a revelation that amidst all the losses, the essence of this man I loved was still very much present. Sometimes my own preoccupations obscured my seeing, but astonishingly there he would be the wholesome of his spirit shining through his acuity, his sensitivity, his playfulness and humor all intact."
To read the entire article you can copy and paste this link....
Monday, September 27, 2010
I characterize a phase as a strange behavioral conduct that consumes him for longer than a week. The last few weeks he would get someone's name in his head and then become obsessed with seeing that person. Right now he is obsessed with 'Paula' (our Mom). The reason I use quotations around her name is that we're pretty sure that most of the time he is confusing her for someone else (mainly he's thinking of his Step-Mom who is 91 years old).
He's driving us crazy because it's like talking to a person that has amnesia every 5 minutes. "What about Paula?" five minutes later "I need to see Paula" three minutes later "Where's Paula" and on and on... We have also talked to him on the phone four times in the past 48 hours about Paula and even visited him and talked about Paula. We have told him numerous times that Paula will visit him next week, but of course he forgets. After the tenth time of him asking about her whereabouts I said nonchalantly, "She's probably dying of the heat right now." It was over 100 in Fallbrook that day and he said, "She's dying?????" SHOOT. No, she's not dying Dad, never mind. I was losing my patience fast.
I really have been trying to get a hold of his family so that he can go see his 91 year old Step-Mom, but I'm having a tough time getting someone on the phone. I had to tell Dad that they are on vacation, because he thinks we can just get up and go see them. How do you explain to Dad that you have to call someone first before just showing up at their door? There's no reasoning with him. Everything is very urgent and dramatic to him. He has to see them NOW.
On the plus side though, Megan and I had a great day with him yesterday... Yay! Megan finally got a good day. He was sweet and funny and talkative. We took him to an antique store and he was very engaged in everything we were looking at. Sometimes we would look back at him and he would be looking at a picture of John Wayne or sitting in a chair like he was testing it out or asking us questions. We listened to Frank Sinatra station on Pandora in the car-ride and he was singing along to everyone song.
We also saw Dad's girlfriend and he told her to "go get on your mop and fly away." (Basically calling her a witch.) She responded by saying that they were over and done with. Dad took his hand and dramatically wiped it across his forehead and said, "Whew!" Then they both laughed. I don't think he'll be getting rid of her that easily!
The video below is a conversation that we had with him in the car. We were teasing him and making him laugh... and then he said some funny things... :)
Wednesday, September 22, 2010
Yesterday was World Alzheimer's Day and I would like to share with you a couple facts from the 2010 Alzheimer's Report:
-The total estimated worldwide costs of dementia are US$604 billion in 2010.
-These costs account for around 1% of the world’s gross domestic product.
-If dementia care were a country, it would be the world’s 18th largest economy, ranking between Turkey and Indonesia. If it were a company, it would be the world’s largest by annual revenue exceeding Wal-Mart ($414 billion) and Exxon Mobil ($311 billion).
Wow! I'm glad we're doing our part by spreading the word and fund-raising for The Memory Walk. Thank you again to all who have donated. We're now at $1380.00!!!!!
Megan and I visited Dad today and kept his bad mood at bay. I brought him a box full of pictures and mementos from his 70 years of life. I loved that I could hand him an old photo and he would be able to name the person pretty quickly. He also told us a few stories from his childhood. I think seeing all those things gave him a sense of who he is again and in turn put him in a good mood. Even though he would say "I told them, I'm not staying here anymore," it didn't spoil his mood and we spent a lot of our time today laughing and joking around.
My Mom's name came up and he said, "Oh, Paula. She was mine." Then Megan said, "Yeah, but you're divorced now." And he said, "Oh, you knew her, did ya?" We were laughing and he looked confused so we told him that she was our Mom. Once he realized, he smiled and said, "Dad put out some good stuff."
Sometimes we get a kick out of teasing him a little. Like today when I asked him which one of us is Megan. Smiling, he looked back and forth at us and then chose correctly. Next I asked him what my name was and he couldn't get it until Megan prompted him a little. Then he called me Kristen Lips Kristen. I guess I have nice looking lips?
Before we left, we sorted out all his clothes and took a big basket full of clothes, pictures, cards etc. to the office that didn't belong to Dad. He really racks up the goods. Every time he complains about people stealing from him, I just want to yell, "you're the worst one!!!"
Video below is of Megan and Dad having a good time. I was so happy to get a good picture of the three of us too! Usually one of us has to take the picture!
Monday, September 20, 2010
The new owner is moving in later this week and we can close the chapter on this part of Dad's life. It's a little sad. Anything important that he owned can pretty much be condensed to a few boxes. I still feel sad that I don't know more about Dad's life. I've found more newspaper clippings and cards/invitations. It looks like he joined The Air Force straight out of high school (found his complete and official file with every order given while he was in the Air Force) and then got married at age 19. A few years later, my half brother and sister were born. I'm kind of putting the pieces together. :)
I also found my Dad's baby book and under 'remarks' his Mom wrote, "He wasn't very pretty at first but later on he got so good lookin that we realized we had a real good and pretty baby boy." Hahaha. His baby hair is still taped to the book from his first hair cut. It's a blond/brown... kind of like Megan's when she was little.
Then I found a bunch of pictures with nothing written on the back. Not sure if anyone can tell me who the people are in the pictures. It could be my Grandparents or Great-Grandparents, but not sure. Don't know if I'll ever know.
Nervous to go see Dad this week. Don't know what his mood will be.
Saturday, September 18, 2010
She took him shoe shopping at Wal-Mart (we were told that he needed new shoes since he had peed all over his old ones). This proved to be a little difficult because Dad couldn't tell Megan if the shoes fit when she asked him. All he cared about was trying to get his job back at Wal-Mart. We won't be taking him there again. It's too annoying.
The anger really began when they pulled back in to Whittier Place. "No, I told you, I am not doing this. This place is a Dungeon, I don't want to be locked up anymore." She got him back inside and that's when the tantrum happened. He was.... pacing up and down the hallways, knocking all his hats of the hat rack, showing her how he knocked the screen out of the window, packing up all his stuff and piling it by the door, yelling at Megan. Just unmanageable and extremely frustrating.
The staff tried to offer him Ice Cream so that Megan could slip out unnoticed, but he insisted on walking her out and then pushed his way out the gate. Megan had to go all the way back in with him and leave a different way. As she was leaving, she could hear them saying, "Come over here Dave. Have some Ice Cream with everyone." And he just yelled, "No!! They lock you up... I don't want this." She kept describing Dad's behavior as 'dramatic' because he was acting like we locked him up in an insane asylum or the county jail when in actuality his home is very nice, comfortable, and the best he can get.
Megan is convinced that it's only a matter of time before Dad escapes again. These thoughts are just consuming him and he doesn't seem to be forgetting how much he hates the place. I really hope that's not the case.
Blake and I will be going down to Fallbrook this weekend to help my Mom clean out the rest of Dad's mobile home. The new owner moves in next week and we still have plants, tools, trash, clothes, and miscellaneous stuff to get out of the house. I'm not sure which I'd rather do... deal with Dad throwing a tantrum or finish cleaning out his place. Neither one sounds great, although at least I have help with my task-- Megan was dealing with it alone.
Monday, September 13, 2010
I want to remember every minute of the hour I spent with Dad today. He was so sweet it nearly broke my heart and actually made me cry. I love seeing my Dad happy.
When I first got there he was coming down the hall with a herd of residents getting ready for lunch. Once he saw me, he kept trying to get around the slow old ladies in front of the pack, but he had to wait until there was an opening. With his girlfriend Tabitha at his heels, he finally broke free and came over to hug me. As usual Tabitha said, "She is so pretty. She must look like her mother." Within minutes though, Tabitha's whole family showed up to take her out for lunch for her birthday. She was so moved to see all of them, that she started crying and told me I could take the chair next to my Dad since she will be eating out. She told her family, "That's Dave, he's my boyfriend." And Dad said, "Who? Me?" They crack me up.
Apparently I was the bearer of good news for my Dad who was already in great spirits. I told him that his friend Mike was coming to visit on Tuesday and that Mike was trying to get another mutual friend of theirs to come visit some time as well. Dad has become obsessed with their mutual friend lately and you would have thought that I told him he won the lottery. He was in shock and kept telling me "thank you" and "you did this for me?", and looking at me like I was an angel. Then with tears in his eyes, he grabbed my hand, and said slowly, "I love you so much." Please, break my heart just a little more, Dad.
He went on and on, "I won't spank your butt. I'll probably kiss you..... You are the sweetest girl I ever met in my life.... I'm gonna tie you up and not let you go. No big deal." We also called Megan so she could experience some sweetness and he didn't disappoint.
Part of me is thinking -- I didn't do anything for you to be so grateful, but of course that's not true. Megan and I do everything we can to make him happy, so it was really nice to feel appreciated. And, he has no idea how many people I have contacted and are trying to contact to keep them involved in his life.
Update on The Memory Walk: We've fund-raised about $1000 so far and I know we're still going to do more. Thank you to family and friends who have already donated. I also find it so touching how many acquaintances have been so generous in donating and how many people have donated in honor or memory of a loved one that suffered from Alzheimer's. So many people are affected by this disease. I keep telling people that with a disease that can make you feel so helpless at times, it's nice to feel like we're accomplishing something by fund-raising. I encourage you to donate if you haven't already! Please! You can click on the Memory Walk link under "Helpful Links" to the right to get more information.
Picture above is when Dad told a joke and cracked himself up. Video below is just a taste of how cute Dad was....
Wednesday, September 8, 2010
Megan a 'Crab Bottom' every time she was grumpy. If you know Megan, she's not really a morning person and Dad would try to get her out of bed early and she would not do it. (He also called her 'Dungeon Breath' in the morning. He loved to tease her.)
Okay, enough of Memory Lane. Crab Bottom should be Dad's middle name lately. It's been 2-3 weeks of him being more grumpy than happy. I'm training for a new job this week, so Megan has been dealing with him -- calming him down over the phone and visiting. When she arrived today, Dad was standing in the dining room yelling at the Director of Memory Care and brandishing his address book, "There are all these people who want to see me!" Then he started naming all these people from his past. The director was so relieved to see Megan. I wonder how long they had been having that 'conversation' in the dining room.
As usual he kept saying that people were taking things from him and how he wanted to get out of there BLAH BLAH BLAH.... we know Dad! Then he would obsessively pull out coins from one pocket and put them in another pocket.
After trying to reassure Dad that all of his stuff was still in his room, Megan decided to call Dad's brother Doug. Until last year, Dad and Doug hardly talked. Sometimes 10 years would go by and they wouldn't talk. Don't get me started on the family relations on Dad's side. It's a mess. The important thing is that they started talking again and I called him a couple weeks ago to tell him where Dad was living.
Megan said the conversation went pretty well and Doug wants us to write him a letter with all the information about where Dad lives, so that's just what they did when they got off the phone.
Dad was able to write Doug's name (it looks like a child's hand-writing) and tried to write Brandt but it came out like this: brant d
Not too bad. He told Megan what he wanted to say:
'Doug, Let's get together. From Brother Dave.'
Brother Dave. I just think that's the cutest thing ever.
Dad has a new roommate too which I think is contributing to his grumpy mood. He'll get over it, I hope.
I know we're doing our part to accommodate Dad and to keep his family and friends in the loop, but some days I feel bad that we can't take him to see more people. Our Grandma Olive, Dad's stepmother, is still living in Upland and I feel the need to do a reunion soon. I want to give Dad whatever closure he can get from seeing some of his people again because we all know that it's quite possible there won't be many more visits. People are busy, Dad's getting worse... etc. Maybe I want the closure for him-- Or, at least, I want to feel that we gave him that option. So, next on the list is getting him up to see his extended family in Upland. We'll just have to make the time to do it. (Megan stole his address book today, so we can try to get in touch with more people.)
Thursday, September 2, 2010
The reason the staff at Whittier locked his room is because he has another lady friend. I am telling you, he must be coated in sugar or something, because he can't go very long without one of these ladies latching on. This lady is the crazy outgoing one that I talked about a few weeks ago... Tabitha. EVERY TIME I see her and sometimes every ten minutes, she says the EXACT same thing, "Oh, is this your daughter? She's very beautiful. She must look like her mother." Then she laughs. Ouch for Dad.
For the most part, she's very annoying and everything that I say or my Dad says, she turns into a song. It's actually kind of funny cause she snaps her fingers and tries to dance to the song that she made up. I especially like the song entitled, "Let's Go Water The Plants." But hopefully Dad doesn't say anything gross like "There's a Squirt In My Underwear". That probably won't be a #1 hit Tabitha. Anyway, she follows Dad around everywhere and is pretty possessive of him. If we weren't his daughters, she would probably be upset that we are spending time with him. I do think she annoys him sometimes, and the staff makes sure that he doesn't have to spend the entire day with her.
Because of the new lady friend, the staff was worried that the two of them would be 'up to no good' in his room, and since they can't be monitored every minute of the day, they locked Dad out of his room. In Dad's eyes, that meant that everything was stolen from him. As the Director of Memory Care said, "I didn't realize, but by locking his room, I am taking away the only part of this place that is his. I apologize, I will go unlock it right away." Ever since they unlocked the room, he's been back to his normal self.
I also brought him a little pouch of Canadian and Mexican coins that we found in his house. I know he likes to carry it around in his pocket and I think that keeps him happy and distracted.
The Scabies is gone! Finally. When Megan was at the check-up, the hyper Dermatologist came in the room and gave her a boisterous high-five. This doctor is so crazy and he reminds me of our Pastor growing up because they both get very energetic over little things. Then the dermatologist actually scared Megan by whispering in her ear when she was leaving, "I hope my daughter is like you some day." Apparently his kids are going to be our age when he is 70.
Thursday, August 26, 2010
5.3 Million People Have Alzheimer's in the U.S.
7th Leading Cause of Death of People of All Ages, 5th Leading Cause of Death After Age 65
172 Billion Dollars in Annual Costs
10.9 Million Unpaid Caregivers
"With a rapidly aging baby boomer population, Alzheimer's will continue to impact more lives. From 2000-2006, Alzheimer's disease deaths increased 46.1 percent, while other selected causes of death decreased. Strategic investments in other diseases have resulted in declines in deaths, and we need to see the same type of investment for Alzheimer's."
"Unless something is done, by 2050, up to 16 million Americans will have Alzheimer’s, and a new case will be diagnosed every 33 seconds."
More Facts and Figures Can Be Found At:
Our family has started a team for the Memory Walk 2010 this November 6th in Huntington Beach. We would love to invite any and all who would like to walk with us and/or donate. I've never fund-raised before and I've set our bar high, but we're passionate about donating to the cause. I started with a $25 donation because that's really all I can give at the moment and I would like to encourage other donations no matter what the amount.
If you would like more information or would like to join our team you can copy and paste this link below or click on the link under "Helpful Links" at the top right of the blog.
November 6th is only about two months away! More information to come soon!
Tuesday, August 24, 2010
We had his check up with the Dermatologist and the rash is getting better... slowly. The minute Megan brought Dad back to Whittier Place he was adamant about not going back. Somehow she got him back in and had him take an anti-anxiety pill. While waiting for it to kick in, Dad was ranting and raving about being locked up and how he can't take another day of this. He was angrily pacing up and down the hallways and everyone was staring at him.
Megan called me to have me talk to him but he basically yelled at me on the phone about how we locked him up and then wouldn't talk to me. I could hear him in the background complaining non-stop. A couple minutes after hanging up with them I got a text from Megan, "Dad is crying."
Then he got angry again and Megan told him that he seemed very angry and he should try to calm down. "Of course I'm angry. This place is shit! S.H.I.T. That's how you spell it." I laughed out loud when she told me this and she said there were moments when she wanted to laugh too but didn't want to upset him more. Apparently he kept saying, "I haven't killed anybody. I didn't kill anyone. Why am I in here?"
After trying to talk to him for half and hour, she finally gave up because he was so mad. Dad wouldn't say goodbye to her and he said meanly, "Just forget about you. I'll be fine." She asked him to say by to her and like a little kid yelled, "No."
Megan left crying.
I know Dad's Mom had a lot of angry episodes in her Alzheimer's days and so far Dad has mostly sweet, confused, or sad episodes. I hope this isn't a sign of what's to come in the future. But it probably is. The worst part is that we can handle most of the other mood swings, but I think when Dad gets angry it upsets us and brings us back to our childhood memories of 'mean' Dad. We don't think of him as that person anymore but it doesn't mean that we don't remember how scared we used to be when he yelled. It almost always made us cry.
He's absolutely harmless now and we know that. We'll just have to toughen up as things get worse. Just another awful part of this disease.