Dementia

“A Man Called Otto” my very personal review

/ Laura Lee Carter / 6 Comments

My family has been falling apart…literally, in the past few years. We are a family of elders with no children or grandchildren around us. I am the youngest at age 68.

First my Dad died in 2020 leaving my Mom bereaved, in great need of companionship, and beginning to experience dementia and yet forced to live alone for a couple years, because of the COVID pandemic. In the meantime, my brother John finally left his lean-to tent near Oak Creek outside of Sedona AZ to move up near Mike and I. He needed more help to live. Since 2020 my sister and her husband have been taking care of our Mom in Denver while Mike and I have been helping John access affordable housing, medical care and food assistance here.

As John and Mom’s memory and mental status continued to fail, our Mom went into assisted living in Denver. Today my sister and I do what we can to keep everyone going in spite of our own health challenges. We also commiserate often over what is happening to our family. This can be quite depressing at times.

I spent most of my life trying to “go it alone.” After a traumatic betrayal in my early 20s I decided, “Who needs all those others who can be so disloyal, undependable and will only abandon me in the end?” When I was in counseling in my 30s my counselor assigned me the duty of inviting others to share a hike or a meal with me. I have spent most of my life alone.

This is why I can highly recommend the 2022 film “A Man Called Otto.” This story does not minimize the difficulties of life, especially as we enter our 60s and 70s. The writer acknowledges the “systems” we put in place to retain some sense of order in an otherwise lonely, messy and chaotic world. Yes, life can be so unfair at times. Yes, it is almost impossible to go it alone. Yes, suicide is always an option. Yes, some of us must be forced into caring for others, but that can also be our saving grace.

That is why I so joyfully welcomed Mike into my life at age 49. I changed. I finally found somebody worth my trust and was forced to acknowledge that life would not be worth living without the love and support of my best friend.

We Carters have never been a close family, but now we are finally bound together to face the end of us all. Mike has joined us in this process, as his own brother and sisters face their own demise. I guess this must be a common boomer process we face, especially if we don’t have children or grandchildren that care.

We all face the future as it comes, crying together when we need to, and laughing at it all when we can; knowing that all of humanity has come before us facing very similar situations and consequences. In the process, the love of others is such a plus.

A new stage of life: Becoming a caregiver!

/ Laura Lee Carter / Leave a comment

There are many whom we love, but not all of us are willing to become a caregiver to them. Since I became a caregiver, that distinction interests me. I do understand the urge to avoid taking time out of your own life to be available to help a loved one, but I believe the main reason many of us do not choose to become caregivers is because of the sometimes confusing emotional demands of keeping a loved one going from day to day. Sure most would offer to pick up some groceries or provide other services to their Mom or Dad or sibling, but what about the activities of daily living? What about managing their prescriptions for them or helping them cleanse themselves?

My sister Diane, John and me around 1957 or 1958…

After years of training in emotional caregiving, I am now called to use that training in service to my brother John. My greatest fear at first was to overstep his boundaries by offering more help than he wanted or needed. Just this past week I realized that he so appreciates anything I do for him as his energy and memory continue to fail him. For example, I learned that he can no longer manage his prescriptions and take his drugs on time. I didn’t notice that until he stopped taking his thyroid med and he had all the problems related to that including fatigue, brain fog and severe depression. I got him back on that med as soon as I realized what was going on.

It feels like a lot of responsibility to manage someone else’s life, but I love my brother and I want him to feel better. I can’t imagine not helping him at this point in time. He says he would never go into assisted living or some other care setting like that, so I will continue to help him as best I can.

Here are a few things I have learned about being a caregiver:

Caregivers value and appreciate help from others.

Caregivers take into account their own needs, the persons being cared for, and the other family members involved.

They respect other people’s opinions.

They appreciate the strengths and positive attributes in others and themselves.

They understand that caring for another person consists of letting that person make their own choices without ultimatums.

They wait to be asked for advice.

They are enthusiastic about their role as a caregiver.

They are empathetic and feel love towards the person they are caring for.

They don’t take other person’s words or actions personally.

This is not a job I ever expected to find myself in. I do know it requires patience, compassion, attentiveness, dependability and trustworthiness. I can do that. In fact I cannot imagine not doing it. I just appreciate even more that I’m here to help.

Cognitive Impairment & Dementia Past Age 60

/ Laura Lee Carter / 10 Comments

I’ve been busy lately learning more about “mild cognitive impairment” (MCI) and dementia for myself, my mom and my brother. I was diagnosed in August with MCI by taking a two hour test from a Licensed Clinical Psychologist. This means that compared to others my age, I show some signs of cognitive impairment in a few different areas, mostly in short-term memory. These findings did not surprise me a bit considering my long history with TBI and concussions. In fact I wondered why I bothered with the tests afterwards, because they were so exhausting!

Then a few weeks ago my brother John started complaining of terrible brain fog. He could barely function some days, but it usually became less difficult as the day went on. He ended up sleeping a lot because he couldn’t do much else. I got so worried about him that I called our local hospice people. They were kind enough to come over and speak to John this week. They said he was doing OK and not ready for hospice assistance.

I saw an article in Science Daily recently that says:

“In the first nationally representative study of cognitive impairment prevalence in more than 20 years, Columbia University researchers have found almost 10% of U.S. adults ages 65 and older have dementia, while another 22% have mild cognitive impairment.” in the article:

“One in 10 older Americans has dementia” in Science News, October 24, 2022

Apparently John and I are not alone. In fact I have learned:

“Americans born between 1948 and 1965 are more likely than the generations that preceded them to have multiple health problems as they age. Many develop two or more health conditions up to 20 years sooner than folks from other generations…” according to the article “Cohort Trends in the Burden of Multiple Chronic Conditions Among Aging U.S. Adults” in the June 2022 issue of The Journals of Gerontology

Basically just about everyone in my direct family is dealing with some version of memory loss or MCI, and I am including my 14 year old dog Rasta. None of us are in great shape at the moment. We survive by reminding each other of appointments, etc. My Mom refused memory testing, but her ability to remember has been fading quickly since my Dad died in 2020.

One thing I did learn from my psychologist is that there is now a saliva test to detect the presence of the genetic APOE4 variant, which is associated with increased risk of late-onset (age >60-65) Alzheimer’s disease. 

Here’s a link: https://www.alzheimersorganization.org/product-page/apoe-genetic-test

Of course the next question is, do I really want to know?

The most important healing tip I’ve learned from my own brain injuries (TBI & concussions)

/ Laura Lee Carter / 5 Comments

I just saw an interesting piece on the importance of sleep on the NBC morning news show, which reminded me of the most important thing I have learned from experiencing a traumatic brain injury and a few serious concussions. That is the amazing healing powers of sleep!

I’ve always been a pretty good sleeper and enjoyed every minute of it, but now I see that sleep, whenever you feel like you need it, is your best brain restoring behavior. When we are younger we may try to get away with less sleep than we need, but, as we age, deep REM sleep is essential to brain health and memory retention.

After my traumatic brain injury fourteen years ago, I had no choice but to sleep quite a bit for months afterwards. I also had fractured ribs and breathing problems. That kept my activities to a minimum. But my brain did slowly heal itself over a few years. It literally re-wired itself to work well again.

It was only after a recent serious concussion in April 2021 that I knew that I must take it really easy on my brain and rest whenever I felt fatigued. Then I read Dr. Jill Bolte Taylor’s amazing book “My Stroke of Insight: A Brain Scientistʼs Personal Journey” where she explained how she slowly healed from a terrible stroke. There she re-emphasized the need to sleep as soon as you feel any need for it. In this way I have slowly regained clarity and stability over the past year and a half.

We must all stop fighting sleep and ENJOY IT! It has such a healing effect on your brain and every other part of your body. If you don’t believe me, believe the Dalai Lama:

Boomer health is failing earlier than our parents

/ Laura Lee Carter / 5 Comments

In a very roundabout way, I learned recently that we Baby Boomers are the first generation in American history to have worse physical and mental health than previous generations. Disturbing huh. Along with celebrating my Mom’s 89th birthday this week, I got some results back from a two hour test of my memory, a baseline for future understanding of how my memory is changing. One of the most concerning findings to me was that I suffer from apathy and depression. So, like a good researcher, I started checking to see how common these feelings are among my own generation. Come to find out:

“Americans born between 1948 and 1965 are more likely than the generations that preceded them to have multiple health problems as they age. Many develop two or more health conditions up to 20 years sooner than folks from other generations…” according to the article “Cohort Trends in the Burden of Multiple Chronic Conditions Among Aging U.S. Adults” in the June 2022 issue of The Journals of Gerontology

It seems our apathy may be showing… This study classified people, based on the generation they were born into, like this: Greatest generation (born 1923 or earlier); early children of the Depression (1924 to 1930); late children of the Depression (1931 to 1941); war babies (1942 to 1947); early boomers (1948 to 1953); mid boomers (1954 to 1959); and late baby boomers (born 1960 to 1965).

The researchers looked at nine chronic conditions: heart disease; high blood pressure; stroke; diabetes; arthritis; lung disease; cancer (except skin cancer); depression symptoms; and trouble with memory and thinking skills. Among adults with multiple chronic health problems, arthritis and high blood pressure were the most common for all generations, higher rates of depression and diabetes drove the surge in chronic conditions seen in boomers. Some links can be found between the introduction of fast food and television:

“Fast food restaurants became very popular during the 1950s because families were busy and they needed a place where they could quickly pick up food; people also wanted to be able to get quick food that they could eat in front of their new TVs.”

In other trends, American baby boomers scored lower on tests of cognitive functioning than did members of previous generations, according to a 2020 nationwide study. Findings showed that average cognition scores of adults aged 50 and older increased from generation to generation, beginning with the greatest generation (born 1890-1923) and peaking among war babies (born 1942-1947). These scores began to decline in the early baby boomers (born 1948-1953) and decreased even further among middle baby boomers (born 1954-1959).

 What was most surprising to me is that this decline could be seen in all groups: men and women, across all races and ethnicities and across all education, income and wealth levels. Results showed lower cognitive functioning in boomers was linked to less wealth, higher levels of loneliness, depression, inactivity and obesity, and less likelihood of being married. Could this also be linked in some way to how many of us have tried to live up to our parents’ demands and standards and failed?

The biggest concern is that these apparent trends in lower cognitive functioning in those in their 50s and 60s, could lead to a higher rate of dementia as we age. Among the aging population in the United States, we are already seeing an increase in the number of Americans with dementia. This may continue in our future.

What it feels like to age faster than my friends

/ Laura Lee Carter / 8 Comments

Recently I have begun to realize that what I am experiencing at age 67 is what most in my age cohort will experience later. Because of my present health concerns, lung disease and a few serious brain injuries, I feel now what most in my age group may not feel for a decade or two. This has come home to me with a few recent occurrences.

First is my upcoming 50th high school reunion next summer. At first I got confused about whether it was this year or next year, and when I realized it was next summer that they were trying to schedule for, I had to respond with, “I’m not sure if I’ll even be here by then…Either way I’m pretty sure I won’t be able to come.” 

I have also recently heard from a few friends from decades ago. My best friend from high school wrote out of the blue to “catch up.” She is probably a typical 67-year-old who recently retired, loves to travel, and is proud of her children and grandchildren. They seem to have very few health problems. I told her the truth about my situation. I didn’t hear anything back, period.

Same with a lover/friend from my mid-20s. He sent me a brief e-mail in April saying, “Hope all is well.” I sent him a summary of my life now and received stark silence in return when I told him the truth about what is happening with me.

One thing is for certain, my life experiences in the past decade or so have changed my outlook on life. One cannot suffer a traumatic brain injury and fractured ribs, with periods of unconsciousness over 24 hours, without seeing life differently. Now I see that experience as a gift, one which greatly raised my appreciation of life while showing me that death is truly not so unusual or scary. We may simply experience an accident, lose consciousness and it’s over. Is that so bad?

Losing my ability to breathe without oxygen has taught me compassion for those who lose any basic ability that others take for granted. I know now how others can suffer from judgments from others and how harsh I may have been by unconsciously judging those with limited abilities through no fault of their own.

These challenges and insights I face now are the same as many in my age group will face eventually. I’m just getting an early start. I find my experiences so revealing about disability and aging. I try to face all new experiences with a sense of wonder and curiosity. Too bad others seem to want to avoid looking at my life now and possibly their our future.