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. 

Hearst Castle

My Mom has always wanted to travel to Hearst Castle but for some reason I never got around to it.  We were given the chance to go and I took about 10 days ago for only 2 days but the preparation for it was weeks in the making.  Making sure the car got all the maintenance it needed, routing our travel route making sure we had enough rest stops so she can go to the restroom, finding the right hotel not a motel and making sure we were near a hospital and letting our Safe Return know we would be traveling.  That didn't include making sure I had her pill boxes in order, the door alarm for the hotel door, making sure I had all of her clothes backed, cosmetics, etc...

My Mom did very well the first day, she was very excited and happy although she kept asking who was going to watch our dogs so I had to pull out my post it notes and write on them that my Sister would stay with them and put the post it note on the dashboard which help me drive.

She was in such a good, fun, silly mood on the first day (see bee picture below) but on the second day I could tell her anxiety was affecting her and she wasn't enjoying too much so we drove home after Hearst Castle. She was still enjoying it but she wanted to get home, I asked her if she enjoyed herself and replied yes and I asked where we were coming back from and she replied "Downtown LA"...  When she would forget where she was I can hide my feelings but I was so exhausted from not sleeping the night before because I was worried about her getting up and leaving the room even with the door alarm and the chairs behind the door I still kept waking up that when she told me she enjoyed her trip to Downtown LA I started to cry as I drove.  She saw me and started to say that she hated her brain that it doesn't let her remember and how bad she felt which made me feel worse for showing my emotions so we pulled over for dinner and I had a drink and waited for the traffic to clear up since it was rush hour.

I really enjoyed this time we spent and she loved Hearst Castle, seeing her eyes light-up I will always be grateful that the Alzheimer's Association helped made this trip happen for her.

Mother's Day

Every year as Mother's Day approaches I take a step back and think of those close to me who have lost their mothers in the past year and I give a special thanks that although my Mom is slipping away from me as her mind fades I am eternally grateful that I have her physically here on earth. Although she really never was the hug type of a mom who one who would say I love you I think I make it up by hugging her and constantly telling her I love her and hope and pray she will say those words back to me.   This disease might be making her forget us eventually I know I would hold everyday with her close to my heart 

Alzheimer's Advocacy trip to DC 2013

This past week, I was extremely fortunate to be part of 900 Alzheimer's Advocates who traveled from all over the country to DC to speak to our Congress Members and Senators on the impact of Alzheimer's has on the patients, loved ones and our Nation.  It was an experience that I feel any Caregiver out there should participate, although it might be very hard to be apart from the person who are taking care of, our Politicians need to hear our stories we are their Constituents after all.  Some might be more receptive than others and be willing to hear your story and others might just want the facts.

I was able to meet some amazing people with their own stories of Alzheimer's and how they managed to be a Caregiver and juggle life and knowing that I am not alone in this journey.  New friendships were made on this trip and listening to the amazing speakers we had and what they are doing for a world without Alzheimer's was inspirational.

I was also blessed to have met Glen Campbell and have a picture taken with him, I have loved his music ever since I was child and to have met him in person is a feeling I hold dear to my heart always.  To see this debilitating disease take a man I have only heard on the radio away from the talent he was given was hard to see and to realize that my Mom is not too far behind him in the stages of Alzheimer's made me extremely emotional and broke down in my hotel room wishing to be home to hold my Mom but knew she was in good hands with my Sister and Niece.

Below is a picture of part of our group who had the honor to meet with Congressman Dana Rohrabacher.

Finding the sense of humor in Alz

As my Mom and I were going to my Sister’s place to drop something off, she sometimes gets a bit nervous and thinks I’m going to be dropping her off and going somewhere without her even though we have only done that twice and it was for me to go be gone a couple of hours. So I always tell her the same funny story so she can laugh, I tell her about when my Niece’s friend bought a new car and went to show it off and as they were leaving he was backing up and he went over a speed bump and he thought he had run over someone or something. Mom always laughs really hard and says how silly he is. So that day was no different I told her the same story, we did what we needed to do and left, then I got a call from my Niece that I forgot something so we turned back around being just 5 minutes away and I told her the same story again as we are pulling in and she turns to me in a very upset tone of voice and says, “Just because I have memory loss doesn’t mean I forget things.” Yeah, that took me a little bit to get and I tried not to break out laughing thinking okay now that’s an oxy-moron. Of course I didn’t laugh since that would make her more upset, I just tried to remain serious and do what we needed to do.

I’ve been going back to this a lot thinking of what she must be feeling when I “try” to make things easier for her and at times maybe I’m doing more harm than good especially on those moments she is more lucid than other moments. Trying to do the best sometimes can backfire and I have to just swallow it and hope for the best next time.