Dec 152017
 

Every Christmas, it’s my family’s tradition to make homemade tamales! We make pork, chicken and raisin, usually 12 to 15 dozen. Christmas Eve dinner always includes these specialties, and then our extended family takes some home for Christmas morning. I love everything about this time of year, from our family get-togethers to knitting gifts and watching all of my favorite Christmas movies.

Although we plan to continue these traditions together, I will be resting more than usual. I will require my daughter’s assistance in preparation for the holiday season and help from my sisters in making our feast.

It’s not easy when you don’t feel like you. It’s even more difficult when you start to notice that you are forgetting things.

In 2016, I was finding everyday work difficult, having to use sticky notes at all times to remind myself of the littlest of tasks. “I am having memory problems and I don’t know why,” I told my doctor. “Nothing is making sense to me.” My physician performed some cognitive tests before referring me to a neurologist. Following a neuropsychological evaluation and PET scan, I was diagnosed with mild cognitive impairment (MCI). The aftermath was a blur. This past summer, my diagnosis was changed to Alzheimer’s disease.

Although I was shocked upon my initial diagnosis, I had a gut feeling that it wasn’t going to be good news. I agonized over the next few weeks, trying to decide how to break the news to my friends and family. Finally, I shared my diagnosis with my two adult daughters. They were devastated, as was I, knowing that they would have to be my caregivers someday. Although they have grown up, I still see them as my little girls.

I know exactly how my daughters feel because I experienced an Alzheimer’s diagnosis with my own parent. For five years, I worked full-time while taking care of my mom. Now I am experiencing caregiving from the other side.

I am one of the youngest in my family, the fifth child of six; when I shared my diagnosis with other members of my family, many of them reacted with denial. While my family tried to come to terms with this new situation, so did I. I had to start accepting the new me.

A New Day

Despite my family history, I didn’t see this coming; I always saw myself working until I was much older. Now my life is totally different, but I am dealing with the cards I’ve been dealt. After all, God only gives you what you can handle.

I still have so much to give and want to continue to use the skills I have, which is why I became involved in the Alzheimer’s Association National Early Stage Advisory Group (ESAG), which I applied for after finding information on the Alzheimer’s Association’s website.

I want to make sure the right resources are being provided in my community, because I know that anyone who is recently diagnosed – or who steps into the role of a caregiver – needs help. The most important thing to remember as a caregiver is not to neglect yourself; you are no good to anyone else if you do.

It is extremely overwhelming, providing support for someone you are so close to and love so much. You want that person to be with you forever, so to speak, but you know that you’re going to lose them. The sad part is you lose them twice: when they forget you, and when they pass away. I regret that my daughters will have to experience what I did.

A New Goal

In our Latino community, people are afraid of dementia; a lot of Hispanic people are not going to the doctor or talking openly about the disease. We deal with familial issues internally: if there is a problem within the family, we take care of it.

I can recall my brother’s reaction to my diagnosis. He said that I didn’t need to tell anyone, and that it was no one’s business but ours. I know he said this to protect me, but I have told people, despite it being extremely difficult. It’s hard for me to think about the Latina women who don’t have the support system and resources I do. Who is helping them?

It’s my goal to help get more information out to the Latino community that is tailored to their needs. People are more comfortable in their native tongue, and it’s important that we consider all of the communities who aren’t as inclined to ask for help.

A New Me

As for me, my days are different now. In the past, I would simply jump in the car and go wherever I please. Now everything has to be thoroughly planned out. My youngest daughter Jessica recently moved home to help me and goes with me everywhere. My oldest daughter Lizette handles my budget and the day-to-day things I used to do but can’t do now.

I used to read a lot, but now I have to read things over and over just to let them sink in. I don’t have as much energy, crowds make me antsy and I have trouble maintaining a conversation when my words don’t come out the way I want. My learning ability has certainly changed; it’s difficult being an educated woman who had so many plans that were cut short.

As a Latina woman, I am a natural nurturer. As a community, we believe that it takes a strong person to take care of a family, and that is something I have always done. When Jessica moved in, I was happy, but also sad. She is putting her own personal life on hold by coming home and helping me. That being said, our time together is special. We attend early-stage support group meetings through the Alzheimer’s Association, have long lunches together and even go to the movies during the day, which is something I never did before in my life! I’ve had to accept that life isn’t all work, work, work anymore; I’ve slowed down, and that’s okay. Shopping around the holidays is certainly easier with an extra set of hands!

A New Dawn

You have to be tough if you are living with dementia. You have to push yourself continuously and keep your brain active, and it’s my goal to be as mentally alert as possible for years to come. This new chapter in my life has allowed me to be positive because of all the support I have around me.

To others living with this disease, I can only say “embrace yourself”: love who you are, and accept who you are today. You will continue to make new discoveries about yourself, and you will make mistakes along the way. Don’t trouble yourself over those mistakes. Now is the time when you have to accept the new you. Your new personality and reality won’t be perfect, so don’t strive for that. After all, no one is perfect, whether they have dementia or not.

You may be shell-shocked when you first hear of your diagnosis, but educating yourself will make things easier for you and your family. Do only what you want to attempt to do, go only where you want to go and create whatever it is you want to do this holiday season. You will be with family, the ones you love, and they will understand that you can’t do everything you used to do. No one will care if the house or the tree isn’t perfectly decorated. Just live every moment together in caring for each other. This holiday season, I am so thankful for being able to pray. I am thankful for having another year of still remembering my family and those I love.

About the Author: LuPita Gutierrez-Parker served as a regional admissions advisor for Eastern Washington University for 10 years, following a 32-year career in social services. She has two adult daughters, two cats (Vader and Chewie) and enjoys knitting, swimming, movies and volunteering in her community in Yakima, WA.

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Dec 132016
 
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Lonni, seated, with her sister Mary Allen.

I was a college professor and nurse with my doctorate in education when I started having memory problems that were concerning me. Students had complained of inconsistent homework assignments, and my son Dan noticed that I was repeating myself in our phone conversations. Then one day while giving a speech in Washington D.C. about medical ethics, I totally blanked about where I was and why I was there – in the middle of my speech. That was a major turning point.

This was in 2014, and I was living in North Dakota. My physician acknowledged that she had noticed a change in me as well, and I was referred for neuropsychological testing. After completing those tests and a follow-up evaluation at Washington University in St. Louis, my diagnosis was confirmed as mild cognitive impairment (MCI).

Before I fully adjusted to living with this disease, the news was devastating to me. I couldn’t teach any longer; teaching completely depends on your ability to think on your feet and plan – things I was no longer able to do consistently. It was also devastating for my family, my always being so bright and articulate and then suddenly having speech pattern issues. The uncertainty of where “it goes from here” was overwhelming for them, but we have all adjusted and are doing very well.

My sister Mary and my son Dan and I are a team. We have made some heavy decisions – where I was going to live (I moved in with Dan), how we were going to gauge what I could and couldn’t do, what was safe, what wasn’t. We put plans of action into place. Sometimes it’s the little things, like how Dan calls me before he leaves work so I can start dinner then and not have the stove on all day.

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Lonni’s son Daniel.

I didn’t realize until I received this diagnosis that this support was always there. Not many people have a single 30-year-old son who would take them in and disrupt their life for the sake of their mother, but Dan does it without any regret or resentment. I didn’t realize how steadfast he and my sister were. They both instantly rallied and started taking care of everything I needed. I am in awe of them, and eternally grateful. I can’t imagine my life or going through this without them.

I have always done most or all of the cooking on Thanksgiving, but this year everyone brought something and I cooked the turkey and dressing. I knew Christmas would be a challenge, so my sister will be hosting Christmas this year. I have to change things around a bit to accommodate the fact that I’m not functioning at the same level I was previously. It doesn’t decrease the amount of joy and love we have at Christmas – in fact, we appreciate it more. My sister’s husband is also living with dementia, so we all take advantage of the time we do have together.

This Christmas, we will open half of the gifts on Christmas Eve and half on Christmas morning. We used to celebrate Christmas mornings with our immediate family but now we try to do more things together as an extended family. We are aware that we have more limited time and a need to be together. And actually, this arrangement has made it more fun!

I miss teaching a lot; I worked really hard to get the point where I could teach full-time. It was my goal for so long and I only got to do it for three years. Having said that, I’m a person who believes you just have to adjust your sails and go where the wind is taking you, even if it’s a place you weren’t planning on traveling.

And sometimes we do get to choose where we travel. This Christmas day, after we go to my sister’s home, my son and I are going to drive the 14 hours to North Dakota to see friends I previously taught with who I haven’t seen in two years. It’s people like them, my family and the friends who have stuck by my side who remind me that I am really lucky to have the time that I have. The life I am living now is not the life I planned, but I am living it.

To everyone living with dementia: do not put pressure on yourself to be what you aren’t anymore. Don’t force yourself to be excited or joyous just because it is the holiday season. You will feel better if you relax and be yourself and do what you can do. Don’t worry about what you can’t do anymore. Don’t try to live up to other people’s expectations. If you’re the person who has always cooked all of the food for the holiday gathering, it’s okay to be the person who does just some of it now. It is much more enjoyable than trying to be what you can’t be. Celebrate the season by being you, and giving what you can. Savor the moment.

About the Author:  As an Alzheimer’s Association 2016 National Early-Stage Advisor, Lonni Schicker would like to help reduce the stigma surrounding a dementia diagnosis and raise awareness for the value of an early diagnosis. She enjoys cooking and crafting and lives in St. Louis with her son Dan.

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Dec 152015
 

The holiday season that commences with Thanksgiving and concludes on New Year’s Day is one of my absolute favorite times of the year. Even though I struggle with the daily demands of younger-onset Alzheimer’s disease, this time of year is special because I am filled with the joy, peace and hope.

I was diagnosed with Alzheimer’s disease in November of 2009, so I’ve had lots of time to learn to cope with the challenges of this disease.

This will be my seventh Christmas season since my diagnosis. Here at the Hornback Homestead (a name we’ve given our family home), we go all out for Christmas. Decorating our home and grounds has been a family tradition for decades. Every room in our home has at least one themed tree. Some of our favorites include a Longaberger basket tree, family picture tree, nature tree, angel tree, military tree and a White House ornament tree. We start decorating right after Thanksgiving and usually complete the task within two weeks. At night, our home – which sits atop a small hill – gently glows with the warmth of thousands of white Christmas lights.hornbackfamily

In our neck of the woods, this time of year is celebrated with down-home gatherings of family and friends.

One especially wonderful time at the Hornback Homestead is Christmas morning breakfast. We serve platters of poached eggs, country ham, red-eye gravy, biscuits, smoke-cured bacon, special seasoned sausage and white sausage gravy. It is a delightful meal our family enjoys with my wife’s side of the family just before we open presents on Christmas morning.

It also has been our tradition to host a large open house for the community at our home. However, this tradition will change this year as I’m unable to handle large crowds as well as I once did. Instead, we will host smaller groups of friends and family at our home.

I’ve found that smaller groups are much easier for me to handle. If things get too hectic, I often leave the room and find a place of solitude until my stress and confusion subside. If I’m having trouble communicating, I simply listen and enjoy the company rather than attempt to join in the conversation. These strategies have made the holidays more enjoyable.

A huge part of our holiday traditions center on our faith.

We celebrate this time of year with our church family as we joyfully thank God for His many blessing throughout the year. Even in the midst of living with younger-onset Alzheimer’s disease, I have so much to be thankful for in my life: a devoted and caring wife, a loving and understanding family, a top-notch team of medical professionals, an active and caring Alzheimer’s Association, a new clinical trial for Alzheimer’s disease, faithful and helpful friends, wonderful support groups and a compassionate and caring God who gives me strength for my daily battles.

As you enter this holiday season, let your heart be filled with the joy and peace which the angels declared over 2000 years ago.

To my wife and family, thank you for the joy you shower my life with, for making every day special and for loving me unconditionally. From our home at the Hornback Homestead, we pray that God’s rich blessing will blanket your home and family during this holiday season.

About the Author: Paul Hornback was diagnosed with Alzheimer’s in 2009. He is a member of the Alzheimer’s Association 2015 National Early-Stage Advisory Group and encourages newly diagnosed individuals to stay positive and active.

Paul and his wife Sarah live in Hodgenville, KY. Together they have three children.

Dec 232013
 

treeI miss Jim so much during Christmas time. I miss our discussions about what to get the kids and our families. I miss sitting next to our tree, looking at the lights and sharing quiet time together. I miss feeling excited, wondering what thoughtful present he placed under the tree. I miss singing songs, watching movies and so much more. Jim still throws out a hum (actually, lots of hums) during Christmas songs, but it isn’t the same. He is here, but he isn’t here.

Ever since I moved out into this great big world on my own, I have sent out cards every December. Except for last year. And the year before. And the two years before that. I haven’t had the energy. I haven’t felt jolly. And what would I put in there? Oh, life is great. We are watching Jim progress with Alzheimer’s and have no idea what our life will be like next year at this time. Merry Christmas.

The holidays are hard for Alzheimer’s families. I know this, yet I try to think that our holiday will be different. Last year, I was talking to a good friend and lamenting that I didn’t know if it would be our last “good” Christmas with Jim and that I needed to make it special. She very sternly replied, “You don’t know what is going to happen. This may be the best Christmas ever and next year may be even better. You need to just enjoy this Christmas.” It turns out, she was right! Last year we had an awesome Christmas. We probably had the best one ever.

I approached this year with similar hopes. But when I left for work on a recent Monday, I asked Jim to put the greenery and lights up on the porch, as he has done for as long as we have been together. While I was in a lunch meeting, Jim called. I heard him crying. “I just can’t do it. I can’t put them up.”  Why? Why did I ask him to do this? Why do we have to decorate our house for Christmas? Why can’t I find the time to do everything? Why? Why? Why?

I told him I was sorry, that I should have never asked him to do it. There really is this very fine line to walk. I have to give Jim tasks to do, yet I must make sure they are tasks he is able to do. Sometimes the “simplest” thing he did just a week ago seems foreign to him. Sometimes I forget he can’t do it. On top of that, Jim is still aware of what he isn’t able to do and it is a very hard pill for him to swallow.

Despite these moments – and the moments I feel the sadness and isolation this disease brings, I am still thankful for many things. I start with being thankful for my children. They are what motivates me, inspires me and keeps me smiling. I am thankful that I have Jim as my husband. He has been the most wonderful man, father and friend. Each day he continues to lead our family by example. He shows us all how to put our big pants on, live each day as it comes and do the best you can. He has no expectations, so he is never disappointed. That is all any of us can ask or hope for, no matter what our situation.

I am also thankful to all of those who donate time, money and energy to finding a cure to this horrible disease that has taken over my life and so many others’ lives. Thank you for being so generous and for believing that one day, we will all feel a sense of accomplishment. We will feel we were part of the solution.

Until that day, we will carry on our traditions for as long as we can. We may start new ones. We may lose a few along the way. But we will do it with each other. I love my family. I am grateful we have so much, when so many are in need. I am grateful it has been such a great year. I am grateful for all I have—and yet I still feel sad.

I miss Jim.

missingjim

About the blog author: Karen Garner is a mother of a 9-year-old son and a 12-year-old daughter.  She works full time and is care partner for her husband, Jim, who is living with younger-onset Alzheimer’s. She shares her journey through her blog, Missing Jim.

 

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Dec 232011
 

There are some topics on our message boards that pop up to surprise us, while others follow a pretty predictable cycle.

Every year, around the holidays, calls to our helpline and posts on our message boards indicate many family members notice the signs and symptoms of Alzheimer’s disease or advancing dementia. This is especially true of out-of-town family members who don’t see the person with dementia every day; they compare behaviors to previous times — and the difference may be startling.

The out-of-town family member may react by offering uninvited advice and opinions to family members who are dealing with dementia on a daily basis. And that’s when we see posts like this one:

“How dare she fly in here from thousands of miles away and say what our mother needs. I’m the one who does everything every day for her. Who does she think she is?!”

I think that it’s very natural to resent the advice of someone who is less aware of the daily needs of the person with Alzheimer’s and how much work it can take to meet those needs as the disease advances. But what’s harder to do is to accept that these family members are offering caregivers something very valuable – something that they cannot provide for themselves. They are offering perspective.

When you’re very close to something and looking at it, you see all the details. You can see the lines and veins in a leaf, for example, only when you’re close to it. You can see the effect of a slight breeze as it meets the leaf and moves it, even slightly. But what you can’t see, is the size of that leaf with respect to the whole tree — or a whole forest. For that perspective, you need some distance. And distance is something that daily caregiving just doesn’t allow.

So when the family gets together and someone offers opinions from a more distant viewpoint, it can help to try to see it as information that reflects a different perspective — one that can only be seen clearly when the viewer isn’t too close to the details. And sometimes, that view can even encourage caregivers to take a step back and incorporate additional resources they may not have considered before.

For the holidays,  a little perspective can be a wonderful gift.

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Today’s guest post comes from Ellen Carbonell, LCSW, Associate Director, Family Programs for the Alzheimer’s Association’s national office.  Ellen is responsible for developing and producing dementia-related family programs for chapter implementation nationwide, and oversees the caregiver and early-stage support group programs. Trained as a clinical social worker, she has over 30 years of experience working with individual and family programs in mental health, vocational, educational, clergy and voluntary health care settings.

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