What They Don’t tell You About Dementia

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

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

  1. 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.

    Liked by 1 person

    Reply
    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

      Like

      Reply
  2. 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

    Liked by 1 person

    Reply
    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

      Like

      Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s