Jun 182014

My mom has Alzheimer’s.  And it’s not easy.

Patience is not a trait that runs in our family, and Alzheimer’s tries to take away your control. But I have learned that by educating myself about the disease and reaching out to others going through similar situations, my sisters and I can stay strong.

I was born when my mom was 37 and my dad was 41.  They had already “finished” their family – my sisters were 17, 15 and 13 – but welcomed the surprise.  My mom was involved in everything in our little town, from Rotary Club and the school board to attending college while working full time.  As the matriarch of the family, everyone in town knows her.  The entire family, including Dad, look to her in order to be in the know.

Thanks to you and your votes, the Alzheimer’s Association won a $75K donation in the DSW Leave Your Mark contest.View video

So we weren’t expecting it when we noticed she was not quite on her game.  She was forgetting things. As many tend to do, we attributed it to old age at first.  Because I wasn’t seeing her weekly or even monthly and now lived two hours away, I noticed more dramatic changes than my father and sisters did. We realized that mom should see a specialist, and once she did, we learned what we had feared – mom had Alzheimer’s.

For a while, Mom didn’t want anyone to know.  She was a well-respected community leader still serving on the school board.  As a family, however, we needed support as much as mom did. My sisters and I began researching and reading whatever we could to learn more about the disease; what we should expect, how we should begin planning.Mom n me laughing

I came across the Alzheimer’s Association’s website and started looking for local meetings that I could attend in order to educate myself and my family. I registered for the Walk to End Alzheimer’s and got my family involved.  Mom finally became open to sharing her diagnosis and began “letting go” of some of the things she had always done and accepting help.  This was not easy for her to do, but my mom is strong.

I get my strength from her. We aren’t victims of this disease. We are fighters.

Each of us girls has our strong suit when it comes to taking care of our parents.  From daily home maintenance like mowing the lawn and keeping track of medications to legal planning, paperwork and research, we all have our role.  My dad continues to be my mom’s primary care giver, but as he is not in good health, this wears on him.  But he would never complain, because that’s not what he does.

For me, connecting with the Central Ohio Chapter of the Alzheimer’s Association has provided the support and education I need to face this disease. When I attended my first monthly “happy hour” meeting, I met others like me – moms with young children who care for a parent with Alzheimer’s.  Two of those women continue to be part of my personal support system.  We are all in very different stages now, but when I have a bad day, I can message or text them, and they understand what I am going through like no one else in my life.

Me and Mom St JOne of these women invited me to go to some classes with her that would help me understand what my mom was going through using role play.  At first it seemed kind of silly, but boy did I learn a lot about how I was making things worse when I interacted with my mom! Now I try not to correct her, and I try to understand the frustration she must feel when she recognizes that she is forgetting things.

Knowing about what resources are available has helped me in other ways, such as researching financial advice in order to hold onto the childhood property that has been in my family since our grandparents came to America from Czechoslovakia.  For me, planning and understanding how to have these difficult conversations with our family as a whole has been vital.

And as for mom? She benefits from talking to others with the disease at awareness meetings. Seeing friends in her community decline due to Alzheimer’s is difficult, but it helps her prepare for the future.  Meeting with people who are so driven and determined to defeat this disease gives us hope. Advocates with no personal connection to the disease who speak in local meeting provide assistance and news. Everyone plays an important role.

I’m a doer. And as a woman, the daughter of someone with Alzheimer’s and a mother, I know something needs to be done. I don’t back down. I am not embarrassed to ask for help. I’ve developed control so that I don’t allow this disease to make me a victim. I am never a victim… I get that from mom.

About the author: Patti Gilligan, a director of change management at DSW Designer Shoe Warehouse, nominated the Alzheimer’s Association as one of seven charities competing to win a $75,000 donation in DSW’s Leave Your Mark program. 

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  23 Responses to “Facing Alzheimer’s With My Mother’s Strength: Patti’s Story”

  1. I have read this article several times trying to compare my situation to Patti's mothers and see some parallels. The review of for mothers activities in her little town to me looks like she might have been in overload in all her activities bringing stress to her life . . Before my retirement 3 years ago I had what I always referred to as "the job from hell". The most stressful job in my life to end my working career. After coming to the conclusion that I had to get out of there … to save my life and my sanity . I was well aware that heredity has dealt me a poor hand with Alzheimers running rampant on both sides of my family and was wondering how long it would be before it affected me .
    About a year after my retirement at 61, I was diagnosed with early on-set Alz . Next thought, what was I going to do about it !! After reading countless articles I came to the conclusion that anti-oxidants was the path to go down . I now take a small hand full of a variety of anti-oxidants daily and I can honestly say that I am doing better . I can now read, understand and remember …. something I was having Great difficulty doing 3+ years ago .

  2. I am a daughter of a strong beautiful mother who also a fighter I won't give up or give in to this horrific disease count me in to help support our love ones thank for sharing your story

  3. Thank you for bringing this disease to the attention of many people who have not had it touch their lives yet!

  4. Thanks Patti for sharing our family's story!

  5. So proud of my sister in taking this lead roll in getting our family story out there! So hard for each of us to ask for help, but it is what we need, not only for our mother but for so many millions of others like her. Thank you for reading and for your support!

  6. Very proud of you for doing all you can to fight this awful disease. Xoxo!!!

    • My family had many Alz victims, Grandmother, Mother, Father, Brother and a few aunts and uncles on both sides and now ME. I have written a book about our journey with this horrible disease. My book is a look at the humorous side of this ALZ and I would love to share it with all ALZ friends and families. "Mother, I Am Your Daughter…Do You Want To See My Driver's License, AGAIN? Get it on Amazon and tell others about it please. I think anyone who is dealing with this horrific disease, family and friends, will really get a laugh or two and it will lighten their day and know they are not alone.
      Thanks, Diane DuPre dd96961@yahoo.com

  7. My mother lost her life after suffering 8 years with Alzheimer's. My dad, two sisters and I will do anything to help raise funds for Alzheimer's Association. We do this in memory of our mother, M. June Malone Perrin. Perhaps our efforts along with others can help future generations from this catastrophic illness.

  8. Thank you for sharing you family’s story. I am so proud of you and your mom.

  9. Every time I read this article, I cry. We are a strong family, and we don't cry! I am the sis that lives next door. I help both mom and dad and check on them daily. We all put up our big front of being "ok". We try to handle things with laughter, that's what works best for us. I am so thankful to be part of a family that all works together to do "our" part to help. I am thankful to not have to make decisions alone. We get worn out, and stressed out, but I pray this disease never tears apart our family. Thanks to my sister Patti, who has done so much research and keeps us pumped and involved. She is a true Leader and I am so proud to be her sister. I pray for strength daily and that we find a cure to end this horrible disease.

  10. Patti, well written piece and meaningful. Your value of PERSONAL ACCOUNTABILITY shines through. My wife lost her dad at 69 to this disease … we understand. Our prayers are with you all!

  11. Patti the pictures of you and Mom make this a real story. I appreciate all you have shared with me. Great article that gives me the fight to end this terrible disease.

  12. Thank you so much for sharing your story and helping to educate others. And thanks too for nominating the Alzheimer's Association for the DSW funding – that will help us support even more families and continue to look for a way to successfully fight this disease.

  13. So thankful you shared and rallied for all of our cause! I’m taking care full time for my mother that was diagnosed last year at age 63. I feel for the first time I really accomplished something by helping vote and reach others also! Thank you!

  14. Thank you for raising awareness to this disease. I have Early Onset diagnosed at 54 yes old. I am also committed to fight and raise awareness and educate caregivers about the disease. You are an inspiration for me. Again thank you.

  15. Thank you Patti for nominating The Alz Assoc for this donation! I shared it on Facebook everyday! I lost my dad on 2/25/13 to Alzheimer’s! It is now my mission like yourself to DO SOMETHING! So glad they win!!! 🙂

  16. My father was the first to come down with this. Then my oldest sister. They are both gone now. I have my next oldest sister fighting this. I also have a friend who has both parents with it. She is having a much more difficult time due to being an only child. Oh, I wish I could help her. Thank you so much for doing what you did. I guess I am lucky that once it hit, it seems to progress fairly quickly. You feel guilty saying things like that, but the torment is so tough. I am glad your mom knows what is going on, and is not in denial. I know every case is different, and that is where we need the funding to figure it out so we can fight better, longer and stronger, for them today, for us tomorrow…

  17. My Mom came down this awful disease a few years ago. My Dad was her sole caregiver, until he recently passed on Dec 28th, 2013. I returned home in upstate NY to care for both with aid from Hospice. They were wonderful despite the season. You made me laugh with mowing the lawn, that I had to share my story. After Dad passed, I tried to fill his shoes by loading the wood stove fireplace (before Mom would complain that she is cold- so I was up by 6), and shoveled the snow. We went to visit my brother in sunny CA and thinking it would be a permanent move. Mom insisted in returning home. So I was back to trying to fill my Dad's shoes by mowing the lawn, planting a garden and cooking. I DON'T know how Dad did it! Never complaining….. My Mom is back in CA with my brother and her 3 caregiver. My brother and I see the way to care for Mom very differently. He is power of attorney and proxy, so I feel my feelings and input is never of any value.

  18. My dear friend Laurel has had a similar experience over the past several years, working with her sister to care for their mom as symptoms advanced. Laurel has followed this up by creating a doctoral research study on how Alzheimer's Caregiving impacts family members, and she needs caregivers to participate. If you are a family caregiver, please consider taking this TrialMatch-approved online survey. You will be helping to advance this important area of research, hopefully leading to better support for future caregiving families.

    The study is described in this blog post, with a link to the survey at the end: http://www.mindingoureldersblogs.com/2014/07/expl

  19. Thank you Patti Gilligan for nominating the Alzheimer's Association for DSW's Leave your Mark program. That simple decision led to $75,000 research donation that hopefully will eventually benefit thousands of people struggling with this insidious disease. Everything good in life comes from love taking an action. Thank you for your action based on your love of your parents!
    My mother passed away last September, after caring for her throughout her 10 year struggle with Alzheimer's, and I will continue to Walk to END Alzheimer's in her memory until better treatments and hopefully a cure is discovered! Sharon Shelton

  20. I am an only child. My Father past 1998. My Mom was diagnosed 2005 with Alzheimer's. It has never been a question of who would be her caretaker. Its a given. I will. It is my privilege to serve her. She is a beautiful 72 y/o woman with a contagious spirit that lights up a room when she's in it. I have been her primary caretaker, per her wishes, for several years.

    We live in a relatively small community where everybody knows somebody. Many stressors have gravely affected my Mom's cognitive awareness. The greatest ongoing issues are regarding my youngest daughter's abrupt decision to run away a week before graduation. No goodbyes. No calls. No nothing. To make things even more intolerant, rumors swarmed her chuirch families and pastor. She feels they have turned against her. We talked to her pastor. All he offered was a prayer and a handshake. For Kimberly's b/d I contacted her Dad and he had Kimberly call back to speak to her Grandmother. Alot of tears from them both. Mom asked her would she ever see her again and she replied that she didn't think so. The next day her husband filed divorce papers, the following week our new car was stolen. Mom developed a UTI. She was admitted to Oceans for 10 days. Excruciating for us both. Every time Mom hears thru the grapevine that her precious Kimmie was here in town, living with another church family, worshiping in the Church my mother had faithfully attended for 20 years, and no one felt it was prudent to encourage Kimmie to talk to her or talk to her Mother not even my mother's husband said one word to prevent this deadly ongoing torture from stealing what's left of my Mom's so called good days.
    Oceans offered hope, but reality gave very little. Given a choice, I will not allow her to admitted to this facility again. Call it a daughter's intuition, call it whatever you like. I felt I had been given a sales pitch and the delivery sucked. Making decisions, from the most insignificant routines of daily living to life threatening issues beyond our control, this is so much harder than I imagined. I am ashamed that I am not able to handle life's challenges and this ever changing disease. I sit silently alone in the night racked with guilt,. fear, and determination through burning tears. I will not let her go!! No matter what may come she knows — she will not have to face it alone — I will never never let go. Forgive me, this was my first time to reach out. I sometimes can hardly breathe the pain of loss is so suffocating I wish my daughter could see it in her heart to stop this senseless mental war, because soon the battle will be over and no one will have won.

  21. This is an inspirational story for me. My mother is 80 and diagnosed with advanced dementia on paper, but the doctor looked her in the eyes and told her she had Alzheimer's disease. I remember thinking how can you be saying this to her as calmly as you would be telling someone they have a cold. I take care of my mother with no help or cooperation from my 3 siblings. My dearest friend has stepped up to be my only support and without her hugs I don't know what I would have done. I cannot let Mother go through this horror alone. It's hard, so hard that many nights I lay awake for hours trying to figure out what to do, what's next. I travel with her and take her places to make her smile, but depression is pushing it's way deeper into both of us. Now we depend on each other for strength to press on and keep making memories even if I'm the only one that will remember them in the end. I love you Mother, with all my heart.

  22. I wish my mother and her family were as accepting of this disease as yours. My mother is in total denial and so is her brother and friends. Her brother was telling her that her driving was OK, when my daughter and knew she shouldn't be driving 2 yrs prior to her diagnosis and even when her doctor revoked her driver's license her friends and brother were still telling her she was OK. The right side of her car with the scratches and destroyed hub caps tells the truth. She started to disown me about 2 years ago when I urged her to get professional help, now I have been legally banned from her life. I believe her and others' denial is leading to a rapid decline, such extreme weight loss.

    My parents are divorced. My father also has Alz. but his story is more positive like yours. He remarried and he and his wife kept their health in check. My father was diagnosed early, the diagnosed was talked about, accepted and out in the open. Up until recently he and his wife led a very physically and socially active life. He started Alz medications early, they might have slowed down his disease as he has had Alz longer than my mother, but seems so much better. He has a sense of humor about it and not afraid to admit his limits which really helps everyone around him. Of course I am concerned I might get Alz. but if I do reading a positive story like yours and remembering to be active and keep a sense of humor will be very helpful. Thanks for sharing.

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