When Illness Hits Home – Coping With My Mother’s Dementia

You wouldn’t know by looking at her. At 82 years of age, she looks great – smiles, looks you straight in the eye, nods her head in understanding. But when she tries to make a sentence, she mumbles in nonsensical words. In that moment, the sad truth becomes evident. She doesn’t know my name, or that I’m the youngest of four children. She doesn’t know who I am or that I am her daughter. My mother is entering the latter stages of vascular dementia, the second most common form of dementia following Alzheimer’s Disease.

Dr. Hoppe's Mom

Over the past 4 years, many of you have followed me as my mother’s cognitive and verbal functioning have steadily declined. At times, knowing that she was once a vibrant, highly intelligent and physically active woman, watching her cognitive function slowly deteriorate to this state is difficult to face. Before I go further, it is important that I share some important history about my mother.

She was the oldest of four children, born in Berlin, Germany on March 5, 1935. As a young child, my mother had fond memories of her father teaching her about herbs in the garden and learning about plants. Then the world turned upside-down. The rise of Hitler and WWII hit Germany and the rest of Europe. Growing up, my mother told me stories about how they barely had food to survive and she had to stand in line to get rations of food for her family. They fled from Germany to Poland in the later years of the war. Although, my grandparents not Jewish, my grandfather opposed the Nazi regime, and thus, was sent to a concentration camp where he ultimately lived out his days. By her late teenage years, my mother decided she wanted to settle in America.

My mother met my father at party. He was handsome, smart, older, (13-years older) and wanted to learn English. She was the perfect match. After teaching him English, they married, and moved to the United States in 1958 (That’s the quick version of the story!). My father studied psychiatry in Germany and needed to write and speak English fluently to pass his exams. His first position was at the State Mental Hospital in Delaware where they lived on site for the first few years. My oldest sister was born in 1959 and in 1960 they moved to California where they had three more children – me being the youngest.

Growing up, I was always so proud of my mom. She was strong, determined, and seemed unstoppable. Her hard-core German nature and work ethic was transferred to all of her children – work before play, always!

She loved to do ceramic crafts, cook amazing meals, read us Grimm’s fairy tale stories. She was an amazing cook, an avid artist, and lover of nature taking up the hobby of photography during her later years.

While in junior high school, my parents got divorced after many years of turmoil – which I felt was a good thing. Seeing so much pain for so many years wears on a child. My mother then got her chance – her dream – to get a doctorate in psychology. She received her Ph.D., as well as earning the recognition of Phi Beta Kappa, from UC Riverside ( I too earned this recognition at UC Berkeley and the Phi Beta Kappa “key” we both possess bonds me and my mother). She taught classes at UCLA and worked as a clinical psychologist.

My mother remarried, moved to Mammoth Lakes and spent many happy years with my stepfather, who has since passed. She loved to hike the John Muir Wilderness and take photographs of nature. Here is one of my favorites taken in 2012 by my mother.

Picture of Sierra Mountains by Dr. Hoppe's Mom

Her decline was subtle at first. My mother would forget names of people familiar to her, forgot places she had visited and started making up stories about people. She lost interest in photography, hiking in the mountains and she no longer wanted to cook or read books. She became angry and frustrated that she couldn’t remember things.

My mother went along this path describing the stages of dementia:

Dementia Checklist

About a year ago, she started saying strange things and asking odd questions, like “did you know your father?” In November of last year, she hid the black jacket that I bought her for fear that someone would take it. In February, she mistakenly put cat food into the tea pot – she knew something wasn’t right, but didn’t know exactly what.

Roberto's Restaurant

This last visit to my mom was the hardest yet. After driving 6 hours from San Diego to Mammoth, I greeted her at Roberto’s her favorite Mexican restaurant. She was sitting at the table with Rosa, her caretaker. She gave me a big smile and a loving hug. Wow, I thought to myself “Maybe she remembers me!” But alas, she didn’t know my name and called me her sister. I just went along with it because there was no point in arguing or correcting her. In her mind, that’s who I was. Rosa’s name is “that woman.” My mom can’t remember her name either. Just so you can put a name with the beautiful face, here is a picture of Rosa.

Rosa That Woman

If ask my mother a question about how she is doing, she mumbles something that I can’t understand, trying hard to access the words, and then reverts to her native tongue, German. Interestingly, there is one word she hasn’t found hard to say…“BULLSH*T.” She articulates this quite well whenever she disagrees with something, like getting a hip x-ray at the hospital after complaining about hip pain or taking her Coumadin medication.

Knowing her time is limited, I had tried to visit as much as possible over the past few years – driving the 6-hour trek on 395 listening to books on tapes or podcasts. With every visit, I witness her continuous decline from being the proud mother of 4 children who earned a Ph.D in psychology, as well as Phi Beta Kappa, to a woman who can barely form a full sentence.

One thing that is very interesting during this decline is her more gentle and loving nature with me. I’m not saying that she didn’t love me as a child, but she never really coddled me. Maybe it’s because I always gave an air of confidence and exhibited self-sufficiency from an early age. Being the youngest of four children, her time was limited and I never wanted to stress her – demanding as little attention as possible. Years later she said to me “You were always so self-sufficient. I knew you could do anything you wanted to. I knew you would always be fine.” At that time, this brought both light and sadness to my eyes.

Now she gazes blankly into the sky and focuses on the picture of her two beloved kitties. Without them, I’m sure she wouldn’t have made it this long.

As I leave, she thanks me for visiting, gives me a big hug and I can feel the love flow through my body. Maybe she doesn’t know that I’m her daughter or my name, but she knows that I’m someone with whom she shares a deep connection and that’s good enough for me.

Dr. Hoppe's Mom's Cats

There is always hope. She is happy, comfortable and enjoys sitting with her cats. Rosa will continue to take good care of her and she will stay in her house – the one wish my mother deeply desired is that no matter what, she would stay in her home and never be admitted to a nursing facility.

Her wish is being honored and we take everything one day at a time. One thing that hasn’t changed during this whole cognitive and physical decline is her love for margaritas!! Taking a big sip from the frosty straw always brings a smile to her face. Along with so many others, that’s one proud trait that I got from my beloved mother!

Margaritas are her favorite

dr. hoppe and her mom collage

 

Thank you for everything, Mom! You’re the best!Happy Belated Mother’s Day! In health and happiness,

 

Dr Diana Hoppe OBGYN in encinitas, CA. signature- hormones, menopause, weight loss, pap smear, total women's health care

 
 

Please share your comments and experiences!

 

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26 Comments

  1. Thanking you for sharing your personal story about your Mom.
    Bitter Sweet and Beautiful.
    Sonia

  2. Dear Dr. Diana –
    I won’t get into the story about my mom and her dementia, as you already know we share the same experiences in terms of the Alzheimer’s stage of our moms.
    I just wanted to reiterate I feel your pain and heartbreak. It truly is so hard watching them disappear. It was fun to see the photos, especially those of the cats we talked about on my last visit.
    It will be interesting to see what the future holds…
    Always here to share –
    Penelope

    • Yes, she loves her cats!! And they love her. Each day is a new experience – thank you for your continued support and sharing! – Dr. Diana

  3. Hello Dr. Hoppe,

    I haven’t seen you in a while, but was reading your blog today, about your mother. I had read the earlier story also.

    I wanted to just take a moment, to write a note of encouragement.

    I see how much you love your mom.

    My father had vascular dementia. I lived with my parents from age 40-60, there in Encinitas.
    I took care of him, for eight years of his decline.

    As things progressed, Hospice helped us. It was a Hospice nurse, who gave me such good advice.
    She told me: “Dying is a process, not a destination. You can’t stop the train, you can only keep him on the tracks, comfort and care for him, on the journey.”

    So, that helped me change my attitude, of trying to stop the inevitable, and focus on what was important.
    It really was, the most helpful thing, I learned during that time.

    My father died of old age. Everything just shut down, like a lightbulb growing dimmer.

    He died very peacefully, without pain. (5 years ago, at age 90)

    Unlike, your mom, he knew me to the end.
    The last thing he did, was pat my hand, and said “thank you for all you do, I appreciate it so much”

    So, I know you will find a way, to keep your mom safe, on her journey.
    She needs you. You have the skills to keep her medical care, financial care, home care, all in a way that she will be protected.
    When I would be sad about my dad, I would think of all the many older people, with no one to help them, and I knew I was doing the best thing for him.

    She is so lucky to have you.
    You are a blessing to her.

    You have delivered so many babies into the world.
    I also used to think, of my taking care of my dad, the same as assisting a woman in childbirth.
    I was helping him be born, into the afterlife, and like a labor coach, easing the labor pains, as he went there.
    We also, were able to keep him at home, and all the smells, sights, touch, of home around him.
    I knew, there was a chance, even at the end, that he might be combative, or some medical reason, have to moved, but when he was able to die, at home, in his bed, peacefully, I was rejoicing, that I had made my goal, of keeping him safe and comfortable—to the end.
    We had arrived, together as a team.

    So, I send this, with love.
    And, I know you will do a wonderful job, of protecting your mom.

    I’ll be thinking of you, and cheering you on, to your goal.

    Many blessings, to you and your mom.

    Love,
    Patrice Kercheville Griffin

    • Thank you so much Patrice for your kind words! I especially like the words of wisdom;
      “Dying is a process, not a destination. You can’t stop the train, you can only keep him on the tracks, comfort and care for him, on the journey.”
      You were a gift to your father as I am to my mother.
      Many blessings to you and thank you again for your heartfelt comment.

  4. Hi Diana,

    Thank you for sharing your family’s story, you obviously have had many wonderful years together.
    I can relate to the struggles you and your mom have been facing for some time now. My mother Elizabeth (she went by Betty) passed away three years ago from Alzheimer’s disease. She was eighty-nine and had been battling the disease for 15 years. Our youngest of three boys Russell was five when my mother was diagnosed. He will be graduating this month from the Air Force Academy. It certainly was a challenge to navigate children, parents that were struggling and work. It was a very difficult disease and my mother did suffer although she was such a wonderful example of grace.
    She too was an immigrant, she was born and raised in Ireland. She met my dad John ( he went by Jack) in New York and he also was handsome, kind and hard working. They married had my brother in Miami, my sister in Seattle and then moved to San Diego where myself and younger brother were born. They made their home here and had a good life. My father passed in 2005 from injuries due to Parkinson’s disease.
    My mother and father were always very active and healthy until age 75 when neurological diseases entered their lives.
    I am glad for the time we had.
    I had wonderful parents! And I hold on to all the happy memories!

    Love to you

    Liz Console

    • Liz- yes, so glad that you had such wonderful times with your parents. Thank you for your comments. Holding on to the memories and looking forward to making more!! – Dr. Diana

  5. Hi Diana!

    Loved your beautiful story about your pretty mother and you. It’s bound to help your patients/friends who are or will be facing like situations.
    Last week I reached 88 and A HALF years of age. I’m happy & healthy, and excited to approach 89! (Plus, everyone knows the number that follows THAT.) ha-ha

    My solid, practical, great-hostess mother lived to 92, and luckily was clear-headed to the very end.
    My highly intelligent father (also my hero) developed dementia, and barely spoke toward the end.
    This causes me to wonder WHICH ONE WILL I FOLLOW IN HEALTHY-BRAIN POWER? (rhetorical question)
    Whatever will be will be. My 3 children will keep an eye on me. They already DO. (We’re all good friends!)

    So, I wanted to say hello and I think your ‘personal story’ will do much good for all your patients to read.

    Fondly,

    Lois J Pinch, former patient

    Post Script:
    (I now live in a lovely home in Temecula, just 1/2 mile from my youngest son’s family! He said when he heard me ‘bragging’ about being 88 years old, he
    decided it was time for me to live closer to family than an hour’s drive away. He even FOUND my beautiful 14-ft. ceiling home & had the owner ‘hold it’ for me.
    The other 2 children live from here to Los Angeles. Tom says he can be here in 2 minutes if needed.) Plus, my grandson is my gardener!

    • Hello Lois! I miss seeing you! But glad you are happy in Temecula! Wow, almost 92 – you go, girl!!
      Keep up your great health and vibrant spirit!! – Dr. Diana

  6. Wow that made me cry Diane . I understand the self sufficiency thing that you talk about so well.
    But maybe if we didn’t get those signals we would have been saying “paper or plastic “…
    Thanks for sharing . I’m sure your heart feels lighter.
    Xoxo
    Kathy Fragnoli

    • Hello Kathy!
      Yes, we can at times be a bit too self-sufficient. I’m learning to ask for help when I need it – rather than always forcing through it. Thanks so much for your comments and my heart does feel lighter sharing this with all of you! – Dr. Diana

  7. What a lovely tribute to your mom from a loving and caring daughter. Thanks for sharing! My parents died many years ago but I worry about my own kids coping with me as I age- the emotional as well as financial burden.

    Articles like these can prepare us.

    Kindest regards,

    Irene Dickson

    • Thank you, Irene! Happy that this article can help families out there dealing with dementia and all that comes with it. Your children love you and please don’t see yourself as a financial or emotional burden. You are a true gift to them!! Here’s to more incredible memories! – Dr. Diana

  8. Dear Dr. Hoppe-

    Thank you so very much for sharing your story of your Mom. What a beautiful, smart, strong lady your Mom is. You are blessed to have such a role model as she. Continue to treasure the loving, fond memories you share.

    Sincerely,
    Deena Klem

    • Thank you, Deena! Making memories is what it’s all about! Loving each and every day. – Dr. Diana

  9. Dear Diana,
    Thank you for sharing your story and the love that you have for your mom; you opened my heart wide and tears are flowing. What a blessing to have this chapter with your mom, even though it’s painful. I admire you for giving yourself the time with your mom. I love you friend, Berta

    • Thanks, Berta! Yes, it’s hard and it’s good for me to share this with my beautiful friends. Love you, Berta!

  10. I am so sorry to hear that your Mom is deteriorating to the point that she doesn’t know who you are. I cannot imagine how much it hurts to see her like that. My hear goes out to you. You are a most wonderful daughter, and somewhere inside her, she knows it. hugs, judi gerber

  11. Thank you so much for sharing your story with us Dr Diana. What an amazing and beautiful woman your mother is, and I love all of these pictures of both of you. You have created so many wonderful memories with her and continue to do so that you will always carry with you. Having found myself on a similar journey with my own mother it was very comforting to read your story. We had to put my mother in a memory care facility (she’s in Virginia) a few months ago and she and my dad are living apart for the first time in 50 years. When I call her she gets on the phone and says “Oh hi Elise” I sigh with relief knowing that she still recognizes my voice..this time. I know that will soon change, so I enjoy every conversation immensely and savor each lucid conversation we have. Sending you much love, and thank you for sharing your journey.

  12. I really enjoyed reading your heartfelt article about your mom. I can relate I’m so many ways. It’s such a tough road for those that slowly decline from dementia and those that love them but also filled with so many beautiful and touching moments. I see life go full circle as my mom becomes more the child and my love for my mom grows ever stronger. Even though your mom doesn’t recognize you as her daughter, you are right. Within her she knows how special you are to her and I think she feels ever more powerfully her love for you.

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