What They Don’t tell You About Dementia

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When I was diagnosed with dementia (Early On-Set Alzheimer’s and Frontotemporal Degeneration) the doctors told me and my husband:

  1. My working days were over
  2. I needed to “Get my affairs in order and see an attorney”
  3. The time would come when I wouldn’t recognize my loved ones
  4. For any additional information we should go to the Alzheimer’s Association Website
  5. I may experience “sun-downing” in the late afternoons
  6. Come back in six months to see how rapidly you have progressed

What the doctors SHOULD have told us:

  1. There are many things that can aggravate or enhance the confusion and agitation that comes with dementia. With observation and patience, you may be able to recognize what triggers these symptoms. For example noise, stress, over-stimulation or lack of sleep. These triggers are not the same for everyone.
  2. Once you recognize the triggers you may be able to find ways to lessen their impact. For example, use earplugs when in a store or restaurant to reduce the noise, keep gatherings small to avoid over-stimulation, and when needed take an afternoon nap.
  3. The more independence you give up and allow other people to take care of – the more dependent you will become on others. Change your thought process from “I can’t do this anymore” to “How can I accomplish this task (what changes or modifications can we make to assist me).”
  4. On days when you are using a lot of cognitive reserve your symptoms may be strong (usually in the afternoon). This is your brain saying it is tired and needs a break.  Try listening to some music or taking a nap.
  5. It is OK to take some time to grieve for your losses and accept that life will change. Most people need to experience this after diagnosis and again as their abilities change. In addition to grief, you may experience shock, anger, denial and sadness. These are normal reactions that can help you come to terms with your disease and hopefully help you to move on.
  6. Get involved with others with dementia as much as possible. There are a number of groups that offer video chats with other people living with dementia so you can socialize, ask questions and encourage each other.  dementiamentors.org offers a mentor program so you can have weekly chats with someone living with dementia.
  7. Stay active and socialize with old friends and new. Once you curl up into yourself it is hard to get out.  Enjoy life, friends, family and activities for as long as you can.
  8. Build your passion to fight back! Sometimes it is the passion within us that drives us to continue fighting.  Get involved in advocacy work to educate about dementia.   Contact Dementia Action Alliance at daanow.org to get started.
  9. You will have good moments when you feel “normal” and think you should go back to work and you will have bad moments when the world is a fog (dementia daze zone).You may feel confused and disoriented and find it difficult to think.  There will be times when nothing seems to make sense and you can’t remember how to do things and then the fog will go away (at least for awhile).  It’s OK to admit you are having a bad day.
  10. Dementia is more than memory loss. You may experience problems with your balance, lights flickering in your eyes, hallucinations, develop fears, or smell things that aren’t really there. Don’t be frightened, keep track of any changes or strange feelings to see how often they occur
  11. Dementia can progress fast, but in most cases it is a long slow progression. You may want to keep your affairs in order, but by implementing changes and strategies you will be able to overcome many obstacles and live a beneficial and happy life for some time.

Since I’m sure your doctor said about the same thing as mine, I hope you find this helpful.  Now go enjoy life – Live, Love and figure out how to make adjustments to over come your obstacles.

My motto is: I don’t want just to survive – – I want to live and thrive!

Love & Laughter,

Laurie

17 thoughts on “What They Don’t tell You About Dementia”

  2. Linda

    Hi Laurie, i really appreciate this. I get in denial a lot. The symptoms scare me. I am so glad i can find others too. I really didn’t have it! Even though i am getting worried it m be gettin worse.!! I found a drug that helped but had to get it up. And it got to expensive. All others gave me side effects. I am seeing doc next month cant get in earlier. So i am worried. But i don’t have it!!😊 ha ha.

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    1. Laurie Scherrer Post author

      Linda, Thank you for sharing. Yes, denial is part of the process and there are days I feel so good I try to deny it all over again. I have found so much joy and acceptance in groups of people living well with dementia. If you would like a chance to socialize with others go to dementiamentors.org. Wishing you well on your doctor visit. I stopped taking all meds, too many side effects a little proof that they were helping me. Perhaps the doctor will find something to help you. Love & Laughter, Laurie

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  3. Monica

    Thank you, Laurie. You pegged my experience. It’s so nice to know that I’m not the only one experiencing cognitive fatigue, and the feeling that I’m normal…sometimes. Then I’m flattened by cognitive fatigue and need a long nap. Best, Monica

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    1. Laurie Scherrer Post author

      It certainly can be a really bad roller coaster ride. We have found that the trick is to make the best of the good moments, love, laugh and have fun. WIshing you many days of love and laughter! Laurie

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  7. Bill Young

    I am 68 and have Lewy Body Dementia. I started with mild symptoms maybe 8 years ago, which progressed to a full evaluation and PET Scan about 3 or 4 years ago. Since the diagnosis, I have found that none of the so-called experts seem to know anything about what us dementia people going through. What Laurie said is what I experienced, and it is what everyone one else with dementia I have communicated are experiencing. It is just pathetic that the doctors who claim expertise in dementia have never taken the time to understand what their patients are going through, or give them suggestions for how to maintain some quality of life on their way to death, or just act and respond like they had a heart somewhere in their body. I found this place via a LBD group I am in, so I just wanted to take a quick look at the Blog. I probably won’t return again, as I spend the time I allot to this sort of thing in a LBD-specific group. But I want to thank Laurie for taking the time to help others with dementia. I am gone now.

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    1. Laurie Scherrer Post author

      Bill, Thank you for visiting dementiadaze.com and for taking time to comment. It seems to be a common factor with all types of dementia that doctors don’t understand. Wising you many good days!

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  8. Saro

    Laurie, thank you so much for sharing this. I am crying my eyes out at the moment. It is exactly what is happening to me. People think we just forget. Yes forget is a big thing, but these issues are much more. If you don’t mind I will share this blog on mine, so that I don’t forget where I read it. I am 56 years old and diagnosed with vascular dementia and had 3 strokes as well. To top is Bipolar as well. I am crying a lot and the psychiatrist says it is a symptom as well, but it is so much more than just a symptom. I will also go use that link you shared. Bless you and wishing you many good days. Love Saro

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    1. Laurie Scherrer Post author

      Saro, Thank you for the lovely encouragement. Yes, Please feel free to share this blog. I write and speak to help people understand inhopes of building a better world for people living with demntia. Everyday I make it a point to find at least thing I can be thankful for and one thing to make me laugh. I think finding some joy in life is essential to my well-being. In addition to dementiamentors.org, I am also involved with Dementia Action Alliance (daanow.org) and Alzheimer’s Speaks Radio (https://www.alzheimersspeaks.com/dementia-chats-webinar). There are many chat groups on Face Book as well. A good friend of mine, Paulan Gordon, wrote a book about Vascular Dementia which is available on Amazon: “Vascular Dementia An Inside Perspective”. Hope this information helps! Love & Laughter, Laurie

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