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: 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!