Our Alzheimer's Journey featured on Channel 22 Mundo-fox

Back in June my Mother and I were asked to do an interview with Mundo-fox about our journey with Alzheimer's.  What should have been a two hour interview turned into eight a big portion because of all of the repeating my Mom does now and some little technical difficulty.  It was a three-part series, ours is the second part.

Part one:

https://www.youtube.com/watch?v=s_R7QADLPm8

Part two:

https://www.youtube.com/watch?v=Ap5hoEr6Bgc&list=UU6Sg37N3JGEjbWd4kyQy8Pg

Part three:

https://www.youtube.com/watch?v=11mGsSib5I0&list=UU6Sg37N3JGEjbWd4kyQy8Pg

A Walk to Remember Team Tribute Video 1

Some of our team members have put together our first team video, hope you like it.



http://youtu.be/aO_rQ0qauSQ

Vietnamese Talkshow links

   Below you can find two links regarding the Vietnamese Talkshow I was on earlier this month. It was aired about 5 times in all 50 states including Canada. 

Part 1

http://m.youtube.com/watch?feature=em-upload_owner&v=Fsq5Lap3Llc

Part 2

http://m.youtube.com/watch?v=OshfhwQ6X1k&feature=em-upload_owner

5 ways to talk to someone with Alzheimer's

I personally need to remember these 5 tips because with the hectic schedules we all have I sometimes to forget to remain calm when my Mom repeats the same question when I'm trying to get her breakfast and just dealing with our morning chaos.  I have signs around the house to assist me with as a visual aide.  I hope these tips will help you as well.

Safety Blanket

I've read how those suffering from Alzheimer's become dependent of their Caregivers and even though I'm told by my Niece that my Mom does say nice things about me when I'm not around it's hard to believe it when Sundown occurs and the other "side" of my Mom appears.  (Sundowning is a psychological phenomenon associated with increased confusion and restlessness in patients with some form of dementia. Most commonly associated with Alzheimer’s disease, but also found in those with mixed dementia, the term “sundowning” was coined due to the odd timing of the patient’s confusion. For patients with sundowning syndrome, a multitude of behavioral problems begin to occur in the evening or while the sun is setting.^[1][2] [3] Sundowning seems to occur more frequently during the middle stages of Alzheimer’s disease and mixed dementia. Patients are generally able to understand that this behavioral pattern is abnormal. Sundowning seems to subside with the progression of a patient’s dementia.^[1][2] Research shows that 20-45% of Alzheimer’s patients will experience some sort of sundowning confusion.<sup>[1]  - wikepedia - http://en.wikipedia.org/wiki/Sundowning_(dementia)

My Mother gets a bit agitated and aggressive and says hateful words that hurt but I try to laugh it off as I walk way even though I feel like dying inside but I know it's not my Mom saying those words to me.

The other day I took her to one of our local restaurants (I try to go to restaurants that know us and she likes the food even though I'm tired of it)</sup>

I have been recouping from bronchitis and I drank a cold drink and she tells me "don't drink cold drinks you will get bronchitis and die"  I tell her too late I already got it and she starts to cry saying the I need to take care of myself because what will happened to her if I get sick and I die  that who will take care of her the way I do (I'm getting teary eye rethinking this) that nobody will take care of her the way I do and that I better move over and make space for her because she would go with me if I die.  That made me think of the day she is gone and how empty my life will be without her and I started to cry, the waitress comes to take our order (for the second time) sees us crying and walks away :)

It made me realize that even though she gets Sundown mostly every night, my Mom is still in there......

Television show

A few months ago I walked into a pharmacy for work to spread information about Alzheimer's and the Pharmacist contacted me to do a presentation at her pharmacy but long story short she has a tv talk show and today I was honored to appear as her Guest on behalf of the Alzheimer's Association as part of outreach for our Vietnamese Community. What I thought would only show in the city of Westminster and the surrounding cities actually turns out to be a talk show that is shown in all 50 states including Canada which I found out seconds before going on. They will be editing this week and should be on the air on Monday 3/17, I will update with channel and time. Attached is a snapshot before taping earlier this afternoon. 

Forget, Regroup and Repeat

My niece is part of my Mom's "village" she has incredible patience with her and I feel like I learn from her. My Mom is in a part of her disease where she gets easily aggravated and can say not very nice words and as soon as she says them she forgets and then is cherry and happy again although she gets over it in a blink of an eye it's a bit harder for us who do by forget so easily but we have to regroup fast and not act hurt form her words that can sting and repeat everything hoping for a different result. So that's where "forget, regroup and repeat" comes from.

Valentine's Day

This year my cousin asked my Mom to be her Valentine and of course I tagged along since I'm my Mom's personal chauffeur. Mom sure does love having special attention given to her and my cousin spoiled her and me along the way. This particular cousin has extra patience with my Mom and I feel that it's because she was part of the caregiving team that took care of our grandmother who also suffered with Alzheimer's until her end. My cousin was my Aunt's helper  from a young age and as this disease now has taken over my life I am learning from both my Aunt and my cousin on how to handle some situations that are new to me and although this disease is horrible to see your loved one fight it and have it go from generation to generation I feel fortunate to be surrounded by strong women to support and guide me through this journey 

The Amy Grant Interview

My Caregiver Facilitator emailed our group this in-depth interview with Singer Amy Grant.

The Amy Grant Interview

Gary Barg: Like so many family caregivers, you and your sisters have been caring for both parents at the same time and now, for just your dad. That’s never easy. Can you tell me about caregiving for your mom and dad?
Amy Grant: When I came back from a really busy touring schedule in the fall of 2008, I realized my parents were declining, especially my mom.  She was so frail, it was shocking. And so I canceled everything for 2009—all work, all travel, and tried to be home. I tried to do special things with my parents, helping my mom with bathing and getting dressed. About that time, one of my sisters and her husband moved in with my parents. And so, we were just kind of slowly circling the wagons. But dementia is such a different player. We’ve had in-house relatives before. Both my grandmothers lived with my two older sisters in the last three years of their lives, but dementia made it impossible to just carry on in any normal way. Eventually, we had to get round-the-clock care for my mom.
Gary Barg: Your parents did something that a lot of people unfortunately don’t do. They did a great job of preparing.
Amy Grant: Yes, they did.
Gary Barg: Could you walk us through that?
Amy Grant: Basically, my father took out long-term care insurance and he put money in a savings account that provided us the materials we would need to care for him.
Gary Barg: That’s really smart.  That’s a great lesson for you and for your kids.
Amy Grant: Yes, I know, and I have really been talking to people about this ‘cause you know, my sisters Kathy and Mimi and Carol and I looked at each other and we thought, Oh my goodness! We thought the biggest gift would be to help our kids through education. Now, you know to provide for ourselves, that’s just such a different message for our generation because we have not been a saving generation. But it’s never too late to start working on a plan; and I think in these financial times, I don’t know a family that has not worked hard to simplify. But the real elephant in the room, for all of us and for every family, is just when that shift starts. You know, when we realized that all of these different things were making us scratch our heads like what are Mom and Dad doing? What did she have on when she came to the door? Why did my father make this purchase or talk to this person on the phone? Oh my gosh! We were putting out all these little fires, and then we realized that dementia was at play.
And so while they still had enough mental faculties, we went to them and said this is what we see at work. And please trust us. We need to communicate right now about what matters to you and you’re going to have to trust us to carry it out. Pretty early on, we got our parents to turn over the power of attorney to my two older sisters. There were lots of conversations and lots of time spent together. All those communications are so important. We’ve learned so many amazing life lessons through this.
Gary Barg: I always call these Board of Directors’ Meetings, where you and your family sit down and discuss the hands-on business that’s caring for your loved one.
Amy Grant: Absolutely! And it’s emotional. You know, through the end of life, through death, we have a lot of opportunities to heal unresolved things—to forgive, to let go.  I think when I was a kid, I was not aware of the fact that all this was happening with the much older generations. It’s really eye-opening. But you know, it’s all part of life.
Gary Barg: There’s no formula, but we can learn from other’s lessons.
Amy Grant: Absolutely, yes. That’s true of any hard time. It is our ability to see whatever it is we’re going through in a meaningful light. Otherwise, you just get trapped in why, why, why, and that’s really counterproductive. I mean, tears are essential, but you just can’t stay there. With my parents, I was frustrated. My mother fell again in her own home and we were going through a Rolodex of caregivers trying to find the right fit. Then a friend spoke these words to me, “Take a deep breath, Amy, and just remember this is the last great lesson your parents will teach you.” That immediately created a framework for me to say, “Well, you’re right. This is going to be a lesson in using my creativity, in listening to my instincts and to those moments of inspiration and direction that seem like they come out of nowhere. And trusting that, on some level, we’re all led at different points in our lives when we have the greatest need.” It has been an amazing journey, and I’m so grateful for it.
Gary Barg: So many people who have never been caregivers are always surprised about how caregiving actually brings people closer to their faith. I was wondering how caregiving influences your faith, or vice versa?
Amy Grant: There is immediacy to caregiving. I think what I felt with my mother was being more vulnerable all the way around when in moments of caregiving with her. You can’t help but feel sometimes frustrated, but also an overriding sense of compassion. If you read through The New Testament, there are so many times in the gospels when just prior to Jesus performing a miracle would be the phrase “and moved by compassion” or “moved with compassion” or “filled with compassion.” And I think that the groundwork for the miraculous and the setting for spiritual experience is in the context of compassion.
Gary Barg: What would be the one most important piece of advice you’d like to share with family caregivers?
Amy Grant: “This, too, shall pass.” Nothing stays the same. I think, that’s where the faith element really comes in. There are so many moments in a day that no one sees all of the details of how a caregiver is extending themselves on somebody else’s behalf. But God does, and the way I read my Bible, it is very clear throughThe Old Testament and The New Testament that God has always been devoted to the disenfranchised and the marginalized people in our community. And I mean, that’s what Jesus said, this is pure religion, to take care of widows and orphans. I think there is an audience for every one of us in the details of our lives that nobody else sees, except God, just the one that made us. And when we remember that, it does give value to every sacrifice that nobody else sees. And I know it comes back. I don’t know how, but I know it does.

Arts and crafts

The last five months I had been dealing with a personal matter and as soon as I started feeling better I got sick with pneumonia, bronchitis then the flu so I've had to find ways to keep my Mom busy at home and thanks to the app Pinterest she's been busy with making cherry blossoms out of empty 2 liter soda bottle, vases out of empty wine bottles and other little crafts during the holiday season. 

Finding things around the house without having to spend too much money or nothing at all can be found around the house just need to use the creative side of our brain sometimes.