Wednesday, July 9, 2014

Facing the Truth of Dementia

"Stories can conquer fear, you know. They can make the heart bigger." ~Ben Okri

A sweet friend sent me this book as a gift. Tracy and I met at a writing conference several years ago and then exchanged e-mails now and again. She has a caring heart, and she has also walked dementia's road with her mother. We talked about the challenges of caretaking, the sadness of our mothers losing those wonderful family memories, and the sorrow of losing the mothers we knew and loved so well even before they passed on. Somebody once said dementia or Alzheimer's is the long death. 

Her mother has passed on. My mother is still hanging on, but she's not doing well. She doesn't know me anymore, but she still lets me hold her hand and hug her. Most of the time. She still gives me a kiss when I leave. But this last week, she has seemed farther away and I've had the feeling that something is wrong. It's so sad to sit with her and have her look at me with a "please, do something" look. Most of the time I can't understand what she's saying and she can't understand me either. It's like all the words have been dumped out of a sack and she can no longer sort them out to find the right ones to say or to hear. 

But then Monday when I was there, she suddenly looked up at me and said plain as day, "My back hurts so bad I can barely stand it." The nurse gave her some medicine, but with my mother's extensive osteoarthritis, there's not much that eases the pain. She lived with pain for years. She was tough and able to bear what had to be borne, but that was with memory to give her a reference point. Now each pain is new and unknown since she can't remember the day or hour before. When I went back Tuesday, she was no better. Nor was she any better today when my sister went, but they did let her lie down and she went to sleep. Perhaps that will rest her back. 

Dementia is such a difficult disease, and so many families are facing the same kinds of hard times that my family is dealing with right now. In the introduction to Living with Alzheimer's & Other Dementias, Angela Timashenka Geiger of the Alzheimer's Association says 44 million people worldwide are living with some kind a dementia related illness. I teared up reading the introduction. Not sure I'm brave enough to read the stories. 

Do stories help you deal with problems in your life? 

Many of the stories I've written bring a tear to the reader's eyes. Some of the tears because the story is touching, but some because fiction mirrors real life and sad things happen in life. Mom having to live out her final years with dementia is one of those sad things. It is not what I wanted for her. It is not what she wanted either. She was always so self reliant, so ready to enjoy life. It's not what I would want for anyone. I just heard of another friend who lived life to the fullest that has been diagnosed with some sort of dementia and is in a facility. Dementia happens and it's sad. 

The final sentence in Ms. Geiger's introduction urges all of us to take action in the fight "whether by sharing your experience, speaking up, or spreading the word--so that someday, the only story we have left to write is about the end of Alzheimer's disease." 


  1. Ann, I would love,as a reader, to one day read about the end of Alzheimer's disease. I wish your little mother was in no pain. That is one of the best blessings that my aunt pain. She says she feels fine so for that I am so very thankful. Your mother will be in my prayers. Please know that I honestly and genuinely care.

    1. Melanie, that is so kind of you. I am always uplifted by the caring messages I receive about Mom. For you to take time to pray for my mother is such a gift. Thank you. I see some of the different faces of dementia at the facility. Some are unhappy. Some obviously not feeling well. Others seem content or at least not unhappy. They're settled. Mom is settled there, but something just seems wrong lately and that makes me think she's hurting.

  2. I'm so sorry your Mom is getting so much worse. I understand your pain. Granny and I had a decent day today. I took her for a haircut and pedicure, then lunch. She was OK for about 3 hours and then on the way home it went downhill~of course that's the norm with her Sundowning. I'm sorry your Mom is in pain also. For now, my Granny can tell me if something hurts.
    I will say an extra prayer for your Mom. And I really look forward to meeting you this weekend.
    BTW~I took a pic of Granny today holding one of your books at Joseph Beth Booksellers in Lexington. I like to read to her and I think she will enjoy your books.

    1. Thanks so much for your kind prayers and thoughts, Chris. Alzheimer's is a progressive disease and the last stages are not kind. I think about you and your Granny often and she is blessed to have you caring for her. It is not an easy journey for the dementia patient or for those taking care of their loved ones. Thanks for posting that picture. It was so cute. Love the way your granny is always so ready to smile. She's like a little kid conditioned to smile by the word camera.

  3. Thanks for your touching post, Ann!! I always love hearing an update on your Mom even though it breaks my heart reading it and brings home to me what I fear is gradually happening to my Mom (although it seems to be a more rapid decline the past 6 months, partially a result of her concern over my health issues - I think).

    I was wondering how long it has been since your Mom was diagnosed with dementia, the process involved over the years, and if you know a good book that defines the different forms of dementia?? I'm at a loss knowing just who to talk to about my Mom's problems. Her primary care doctor has no "bedside manner" or expressions of empathy, and is not a doctor who offers info either - but my Mom likes her, has used her for years, and would be opposed to changing doctors, I feel sure. When I called to see if she could suggest something I could do to help my Mom, or prescribe a med to help her - she really gave me no advice other than to request that I take my Mom to a geriatric psychiatrist before she would consider prescribing any meds (my Mom did extensive testing at a psychologist's office less than a year ago and the results were that she had mild memory impairment but as I said - she has declined more rapidly in the last few months). I think she feels my Mom has personality issues in addition to her memory problems. After numerous phone calls, I'm finding there are few psychiatrists who take insurance and the wait for an appointment is at least 6 to 8 weeks.

    I think I would like to read the Chicken Soup for the Soul book as it will tell me more of what others are experiencing with their loved ones - even though I'm sure it will be a tear-jerker - and the purchase will also help the Alzheimer's Association.

    Thanks for your help and please know that I think of your pain frequently and in addition to continued prayers for the best resolution of your Mom's issues and peace for you, your Mom, and the rest of your family - I'm adding pain relief for your Mom. Love and hugs to you, Ann!!

    1. Bonnie, I've been thinking about you and wondering how you were doing. Hope the treatments are going okay and not too hard on you.

      I have struggled to find information that is helpful, but have read some caretaker books that don't try to educate but only to encourage. And while there are many similar symptoms and behaviors, there are also differences from one person with dementia and another. There are even several types of dementia. Some symptoms of dementia can be caused by medication or by a lack of certain nutrients. So it is good to have your mother examined by someone who will consider all the possible reasons for your mother's mild memory impairment. I'm not sure why your mother's doctor isn't more helpful or at least more willing to discuss your concerns. It could be the reason she's reluctant to give your mother medication without being sure of the need for it is that the medications often prescribed for dementia related illnesses can have major side effects. Perhaps you could consider a geriatric physician specialist instead of a psychologist to begin with. Such a physician would surely have much experience with dementia related problems. My mother's doctor has always been very good with Mom. But of course, Mom usually had a way of seeming fine mentally when we were at the doctors. In the short period of time the doctor saw her, you couldn't really see her memory problems. It was at home that the dementia caused her delusions and agitation. But her doctor was always available to talk to me and help with medication adjustments or whatever was needed. So that was a plus in Mom's care.

      You ask when she was diagnosed. She never had a formal diagnosis, but we started noticing little problems six or seven years ago. She was still living on her own and driving and doing most things fine, but then she started having episodes when she thought something had happened that had not. It was always a bad thing that made her unhappy. At first, we weren't sure it hadn't happened, but then gradually we had to admit that she was having problems. Then about four years ago, she fell and got trapped under her bed somehow. She was so bad then, we really didn't think she would live long. But Mom's tough and she got better. We started staying with her all the time. At first we could leave her alone without worrying for a couple of hours. She always knew us. She could talk about old times. She remembered the grandchildren. Slowly over the years all her memories have eroded. Even the old time memories were no longer what really happened or what she had always said happened. She would drift in time. First she would be a child wanting her mother and father. Then she'd be a young mother needing to go take care of her children. Now I don't know where she is. She seems to have gone deep within to survive these days. She does brighten up sometimes when she holds the baby doll. It has been a slow progression, but it has been a progression. The things we thought so hard at the beginning would seem easy now, but as caretakers we had to progress too.

      I hope your mother doesn't have these kind of problems. Perhaps she is just depressed as the doctor may think and that these issues will improve. I pray they will and that you will feel better soon too.

  4. The life story is very painful. Still, the painful stories are the most meaningful. Thanks for sharing.

    1. Thanks for dropping by, Tea norman. Life can throw us some curves, but with the Lord's help we can get through them. Mom passed away a week ago and now I imagine her remembering everything and laughing and having a great time with the family she so missed in her last years.


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