How old am I?

According to my birth certificate, “Baby Girl” is 62 years old.  It’s a dark and stormy Monday afternoon and I am staring  at a blank screen.  I think of “It was a dark and stormy night….”and I smile.  This is English Comp 101, and my writing prompt is a question by Satchel Paige: How old would you be, if you didn’t know how old you are?

Now I am 18, a freshman in college, and staring at a blank sheet of paper while twirling and tapping my pen.  I am afraid that I don’t know what to write, or how to write it. I am nervous because some of my fellow students are writing furiously.  I am 5 years old and just figured out that the “Redbirds” are the slow readers.  I am a “Redbird”.  I want my Mommy.  And then I am 33 and a new Mother, and I hug and comfort my 5 year old self and my 1 year old son.

My son is 5 and playing on the playground.  He’s about to perform a daring feat and he yells, “Look at me Mom, look at me!”.  I turn to look at him and he’s in his cap and gown graduating from high school, and I am 50. I shake my head to clear my thoughts, and suddenly I am back to 62, and my screen has 221 words on it.

How old am I?  I am a year younger than my husband, but he has late stage Lewy Body Dementia and I can’t really know how “old”he is. My son is 29 and this makes me feel old!  My calendar age is 62, but I feel young or old depending on my mental or emotional status report for the moment.  As a young girl, I remember pedaling hard to get to the top of the hill, and as I went over the top of the hill I could stop pedaling and feel the speed and the wind in my hair.  I wanted to do this again and again… and I still do.

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Questions

When I tell people that my husband Roger has Lewy Body Dementia, my least favorite question is “Does he still remember you?”. This seems like the morbid curiosity that compels people to drive past the horrible car accident so they can see it. They seem to need to know how bad Rogers’ dementia is, and how much I am hurting. So yes, Roger does know me. Lewy Body Dememtia (LBD) has a pattern and timing of memory and other cognitive losses that differs from Alzheimers, but is no less devastating to me or to Roger. The “scene” of dementia is horribly real.  When I am feeling sarcastic, I want to be able to say “It’s great that Roger remembers me; his dementia is a mild case and he will recover quickly and I am fine.”  Unfortunately, I would be lying.

My second least favorite question is “Lewy who?” Then I end up spelling it out, L-E-W-Y Body Dementia, and giving a short tutorial about how it’s not Alzheimers. I am passionate about increasing public awareness of Lewy Body Dementia, but sometimes I just need to know that people care about Roger and I, and are sorry this is happening to us. Maybe I will get cards printed that show how Lewy Body Dementia is spelled and include the website  for the Lewy Body Dementia Association: lbda.org and (horrors) suggest they Google it. The burden of explaining LBD can sometimes put a shadow on expressions of concern and support.

i certainly don’t want to sound whiny because  support is not always expressed perfectly. Awareness of how I feel when expressions of caring miss the target has definitely made me more careful about what and how I say “I care about you.”  Life is not fair and I don’t know why, but I can decide how I want to face this horrible challenge of  dementia.

Susan

My friend Susan worries she laughs too loud.  She doesn’t.  Her laugh is like a great big hug, a hug that says “It’s alright, laugh with me, life is funny.  After many years of living, loving, and learning, her laugh is rich and confident.  When the joke is on her, she laughs first because she knows that she is “crazy”,  life is “absurd” and it’s really all very funny.

Yesterday on our beautiful drive to Red Feather Lakes, we talked about her 45 year marriage. She is sure that her husband is surprised every day by her changing moods. She can leave for a meeting feeling and behaving fine; but return from that meeting scowling and asking “Don”t you have some place else to go?” She expects her husband to just know what to worry about and what to do, then she remembers that he can’t read her mind. That’s good. We both have a good laugh at how unrealistic our expectations are, and even in a marriage 45 years long, we forget that we can still surprise each other.

Then we remember our late night discussions , fueled by beer and cigarettes, about the meaning of life. A silly topic really as we agree that there is no ultimate goal,  and it is the living of each moment as it comes that creates a Life. We laugh because we were so sure that we would find the meaning of life, and now in our sixties we laugh at the silly question.

If you don’t at least chuckle at this quote, something is wrong with you.

When people are laughing, they are generally not killing each other. Alan Alda

And to Susan, thanks for all the healing laughter.

LAUGHTER IS THE FIREWORKS OF THE SOUL. Josh Billings

Stand up and be heard additional information.

In the sea of complaints by caregivers, there was one bright light mentioned several times. Elderhaus Adult Day Programs in Fort Collins was very important to caregivers and their loved ones.  Comments like “Elderhaus saved my life” and “Thank God for Elderhaus” or “I don’t know what I would have done without Elderhaus” indicate that Elderhaus is filling a need in the community and their services are highly regarded . Elderhaus provides Day Services to participants with various kinds of dementia , traumatic brain injuries,and developmental and congenital disabilities, and our veterans. Check out their website at: elderhaus.org or call them at 221-0406. Loved ones can stay in their homes longer , and caregivers have respite, that’s a bargain.

Stand up and be heard.

On Friday, I and about 75 other caregivers had a lunch/ discussion with Colorado Senator Michael Bennett. The Senator asked caregivers to voice our frustrations, and to highlight what we saw as the worst problems we faced in caring for adult loved ones. It felt almost like a union meeting. Tearful caregivers were sharing their heartbreaking stories, and other caregivers called out support like “That happened to me too.” or “We gotta fix these problems now.” I had the urge to channel Norma Rae and jump up on a table and declare a caregiver strike. I felt powerful, and that felt good. The common denominator that all caregivers share is pain and grief, and we stood together united in pain and demanded to be heard.

We were in agreement on several  problem areas for caregivers : 1. Respite care was very difficult to find;  2. We were all overwhelmed with the mountains of forms to fill out; and 3. Caregiving often created financial hardship. It is the complexity of our Healthcare maze that buries and suffocates caregivers under an avalanche of paper. Forced into this complicated thicket of thorns, no matter which way we try to escape it hurts. We are trying to help by providing care for our loved ones, but there are roadblocks everywhere. We get tired and need to rest, but options for respite care are scarce.  Caregivers often suffer financial hardship because our work lives may need to be put on hold. We become sick, caring for the sick. As our 65 +  population grows exponentially, there will be an even greater number of caregivers.

After the event I went to visit my husband Roger, who has Lewy Body Dementia. After caring for him at home, he is now in a skilled nursing facility. My caregiver role continues as I advocate and make decisions for Roger. Forgetting my other concerns , I focused my attention on Roger. I was able to engage him in a picture book about sharks and whales and for a few minutes we were on the same page.

The War on _______ ( fill in the blank).

Since the middle of the last century,  Americans have declared war on many socio-economic issues.  I was one among many who protested Americas’ involvement in the Vietnam War; but how could could I or anyone protest the War on Poverty, the War on Drugs, The War on Crime, the War on Cancer….and on and on?  And today If war is not declared, then we are  fighting for Civil Rights, fighting Cancer, fighting Alzheimers, fighting Aging, …etc.  Lets not forget the battle of the bulge or the battle for women’s’ rights. I don’t know about you, but I don’t like to lose . I certainly don’t want to lose the war on aging, so I need to fight aging and be victorious in the  battle against aging. Or do I?

I believe the language and construct  of war on aging ( i.e. fighting and battling, winning or losing) is false and limiting and doesn’t fit reality or allow for choices that can take the experience of aging out of a war zone. I protest the War on Aging and insist that it is time we “give peace a chance” The truth is that as humans we will all age and die. This physical reality can not be avoided, but as  we age we  can take care of ourselves, adopt a healthy lifestyle and search for passion and a spiritual connection in our ” One day at a time” lives. We can accept our experiences and emotions and  live in and beyond them without needing to go to war with what is essentially just a number. Life gets rich as we age and we need “fertilizer”.

Wrinkles are not battle lines, they are life lines.  Gray hair or the lack of hair does not mean that aging has attacked us and we are pale with defeat; it’s just that gray goes with everything  and baldness really draws attention to our beautiful eyes.  Computers, tablets, I phones, and Bluetooth are not weapons of war and maybe if we study hard we can say ” I know how to do that, let me show you , and I will go slow so you can keep up”.  OK. So maybe I would like the thrill of victory once and awhile!

Hang on, it’s a bumpy ride.

Just the facts Jack…I am a 62 year old married female, mostly normal, not rich, not poor, a fast learner who has lost control on most of the learning curves I have been forced on during the last few years.  Early bicycles were not noted for their smooth rides and were called “bone shakers”. My bones have been shook and I have felt the “A” word a-r-t-h-r-i-t-i-s in a couple of joints. I am aging and I am In the “young-old category. What the hell does that mean?

“We think Roger (my husband) has Lewy Body Dememtia.” and Splat!  I am the bug on the windsheild of life. I don’t die and instead I am now a shapeless blob with brain and bones turned to mush. Without any mercy, Life demands that I become Roger’s caregiver. My husband who was a strong , vital man now needed my care, but I needed him more than ever. I needed to ask him what to do  and he was slowly disappearing into thin air. He is now in a skilled nursing facility.

I want to tell you our story from the beginning and while doing that I also want to share what I have learned about dementia, patient advocacy ,ageism ,and resources in the Fort Collins area. I didn’t ask for this learning experience, but I am living it and learning how to live one day at a time with bittersweet joy.

Hang on, it’s a bumpy ride!