My 50th Birthday, and What Mom Taught Me

Mom was so proud when I finally graduated from college at age 27Today is my 50th birthday, guys, and I'm thinking a lot about my mom, Judy, who passed away almost two years ago.

Fifty years ago this morning Mom was playing the piano through the early stages of labor. She hoped that I would be a girl, as she wanted a daughter badly. In our living room at our piano she was most likely alone, as my father struggled with mental illness and was in his own world even if he was in the house, and my brother, 12 years older than me, was in school. Through the pain of labor my mother sought beauty and comfort in music. Years later, through her struggle with dementia she sought serenity and comfort in the company of other people--me, her grandchildren, her facility staff, and anyone else lucky enough to enjoy her beautiful smile and bright blue eyes. 

If you've read my book you know that Mom was a recovering alcoholic in my teen years, and that we had a rocky relationship all our lives. It was only through caregiving that we truly grew close and became friends.

Of course dementia caregiving is not all roses and sunsets, but those eight years at Mom's side taught me to appreciate simple moments of tenderness, the way her love for me--and mine for her--endured even if she couldn't remember or say my name. 

This morning I made a list of all the things I'm grateful for as I hit the mid-century mark. Although Mom was a flawed, complex character (as am I), she taught me many lessons I will carry with me always. I write about many of those lessons in my book, but for now I just want to say Thank you, Mom, and I miss you so much today.

Diagnosing Depression in a Person Living with Dementia

Mom and me shortly after she moved from my home into assisted living. She showed many signs of depression in the early stages of dementia.Can elders with Alzheimer's disease or another dementia also have depression at the same time?

And how do you diagnose depression in a person with dementia when the symptoms are often quite similar?

As a consultant for eCareDiary.com, I've written a post to guide care partners through these questions.

Can Seniors with Dementia Suffer From Depression Simultaneously?

 

Yes, it's very common for a person living with Alzheimer’s disease or another type of dementia to also experience depression. Thirty to 50 percent of people living with dementia also have depression. 

When my mother, Judy, lived with the early stages of dementia and moved in with me and my family, she felt very depressed. While grateful at first for our help, she soon retreated to her room and often refused to come out for meals. She had no interest in getting to know the neighbors who invited her to join them for dinner and concerts. While my husband and I and our children were out of the house all day, Mom grew more and more unhappy.

Read more here.

Advice for Dementia Caregivers: My Podcasts on Lifestyle Improvement Radio

Download the podcasts below to listen to an interview about my book, "Inside the Dementia Epidemic: A Daughter's Memoir," with Lifestyle Improvement Radio. Rebeca, above, asked me lots of interesting questions about my eight-year journey caring for Mom, and recorded our discussion as two 30-minute podcasts. Here are the links and the topics we discuss:

Part one:

• How I got to the place where I accepted that my mother needed help and that I needed to provide that help
• What it was like for my mother to live with me and my family, and why we decided that assisted living was the best option 
• Overcoming the guilt I felt moving my mother into a facility
• Some of the things that Mom taught me over my years of caring for her
• How writing was a way to address the frustrations of caregiving and to heal some of those feelings

 Part two:

• How caregiving affected my health
• Some lesser-known risk factors for Alzheimer’s disease (such as sleep apnea and high blood sugar)
• Why exercise is the best antidote for Alzheimer's (although there is no proven way to prevent the disease
• Why I was a reluctant caregiver
• How caregiving brought us closer and helped us overcome our challenging relationship as mother and daughter
• Key advice I would give anyone who is just beginning to be a caregiver for a person with dementia

I hope you have a chance to listen to these recordings and that you enjoy them. Feel free to leave a comment below.

Have a great week!

Will Your Doctor Be Reimbursed for End-of-Life Planning?

If you are caring for someone who has early-stage dementia, it's a good idea to sit down with them and their doctor to talk about their wishes for the end of their life. I know it's hard, but the earlier you can do this, the better. And if your loved one is living with more advanced dementia, it's equally as important that you meet with their doctor on your own to discuss end-of-life planning. Such discussions are extremely important not only for your loved one but for your own well-being in the future when you may face heartrending decisions about their care. 

Research shows that family caregivers who have a chance to talk to their loved one's doctor about advance care planning feel less guilt after their decisions as caregivers after their loved one dies. But many of us don't even know if our insurance covers end-of-life discussions. And doctors often do not initiate these conversations. It's usually up to us as caregivers to ask if such disucssions are covered and to schedule them. 

Unbelievably, Medicare does not currently reimburse doctors for these kinds of discussions, which partly explains why many doctors do not take the time to talk to family caregivers about advance care planning. Such coverage was dropped from the Affordable Care Act five years ago because of an unfounded fear of "death panels." There is hope, however; the Centers for Medicare and Medicaid Services is expected to make a decision by November about whether or not to reimburse doctors for end-of-life discussions. 

In my post this week for cargivers.com I describe 

• what end-of-life discussions may include;
• some info about MOLST/POLST forms and how they can help with advance care planning;
• where we stand as a nation with insurance coverage for advance care planning; and  
• how you can support pending legislation in the House of Representatives that would mandate such coverage by Medicare and Medicaid.

I also share my own discussion with my mother's doctor about her end-of-life care.

Read "Are End-of-Life Discussions Covered by Your Medical Insurance?" here.

Why Person-Centered Dementia Care Matters

The Dementia Action Alliance has a new video out that I really love, called "Person-Centered Matters." Just 16 minutes long but filmed by a former National Geographic filmmaker, it beautifully portrays five people living with dementia and how person-centered care helps them live more fully.

Check out the video here.