Conference on Caregiving

Just a side now about the situation today on 10/26/2019 - Northern California once again has wildfires in October - so 2019 mirrors 2017 with fires near me with my looking down my street's slope at a fire's smokey cloud cover in the distance is the same view I have this morning. Honestly It depresses me so much. Unlike 2017, we are much more prepared from having supplies to be ready to go, and of course flashlights, but also dog food & leashes & a containment area for our pets. And we have a spirit of resilience, too, that wasn't there. It sounds like future Octobers (with the typical high winds) will look like this one - planned power outages and a capacity to be prepared to evacuate. If I have the stomach for it, I'll blog more on this.

The real reason for my post is the fact that I'm headed to a caregiving conference & setting up to do lots of presenting. This weekend I'll prepare the materials for handouts and have asked people to help me with art installations for my co-led panel on "Being the Wind Beneath Your Wings" and another topic area of resilient caregiving. More on this soon. In the meantime, the focus is on safety & readiness.

Emergency Procedures for Frail Family Members

I recently reviewed training on Emergency Procedures for evacuation & disaster planning for residents in skilled care facilities and residential care facilities for the elderly which was part of the training I did for my role as a volunteer Ombudsman. For those reading this blog who may want to know some times, there is a terrific publicly available video made available from the San Ramon Valley Fire Department's website found here in which they detail procedures & gave examples of an emergency like the 2010 San Bruno, CA fire emergency from a gas line. This video was made with funding from the FEMA Grant Programs Directorate, U.S. Department of Homeland Security and is helpful in any location in the U.S.and not just in California.

In this video, they talk about the tools and strategies for how to prepare and know when to evacuate, and the steps to follow through safely in a disaster. Many safety procedures are established in a plan already in place but perhaps not reviewed and well known by staff. Taking the time to know these procedures and to ensure things like batteries are still good in smoke alarms(to be replaced one time a year at least & tested regularly). Also having a "go kit" is vital with food/water and medications and battery operated equipment and chargers readily available to leave quickly. For licensed locations which are homes for residents who are frail or incapacitated, having knowledge of evacuation routes & being ready with contact information for emergency agencies is vital. Even just making introductions to emergency staff (like the fire department) is helpful and important - plus reassuring to all to know those relationships exist. Also taking time to practice evacuation procedures if important - even doing role playing. I know in my role as an early childhood education substitute teacher that fire drills are routine and staff and kids are familiar with actions. Doing these actions without an emergency (or even discussing the potential crisis that may occur) can be helpful and keep the mood calm about this topic but offer peace of mind.

In my own experience, we evacuated in 2017 from fire near us in two locations near our home. At first our evacuation was voluntary because we lost power for a prolonged period of time but we returned -- then a week later the evacuation was mandatory and we used help from friends and lived in a hotel while the emergency was handled by firemen. I was only doing some introductory Ombudsman work at the time and not assigned to a residential care facility but I was able to be read some of the accounts of residents of a care home near my home. In the newsletter about the fire, some residents mentioned these memories from their evacuation:

Ann stated to her son by text, "We residents are being evacuated...I don't know where to." Her son then drove on his typical hour drive but on this night took three hours. He learned later his mother was taken to a local high school where she was sheltered in place with 300 others. During the days of separation, some residents of care facilities where able to be helped by other care facilities where their needs were met thanks to transferring medications and emergency information that was transported with the residents for more seamless transfer thanks to pre-arranged or last minute arrangements made. For those in the 2017 sheltering location whose conditions worsened, many were helped by emergency responders (like at hospitals) but know that in an emergency the time to respond will likely be longer. In that time frame I also met a woman with young children and was pregnant. The firemen came to her home to forcibly require an evacuation and she went into early labor right during the firemen's visit & continued to have her baby at a local hospital that evening. Know that everyone is under extra stress in an emergency and those who are medically vulnerable may have responses that require actions that are prompt and involve hospital visits if needed.

Knowing what can happen and planning for it carefully is vital for anyone but even more important for those who care for the frail and older family members. Make your plan now. Below is a photo from my neighborhood showing the fire that approached my home and that took nearly 2 weeks for us to return home from the threat.

At the end of the video, the narrator states, "Thank you for investing in 'readiness'" and I can't agree more. Many investments involve money but this mainly involves time and a state of mind to be ready for action with plans in place. This is an investment we can all make.

Care and the Idea of Self-Sufficiency

When care decisions that are out-of-home are required for our elderly, there are often hard choices to consider. Don't be fooled into thinking "Self-Sufficiency"is the answer when you see warning signs that a parent/elder may worsen. Be ready to answer care needs with options. If staying in the home with help coming into the home for you will work, then consider what is involved with managing this care in-house. And if having an elder move to a facility is warranted, do your homework!

Remember that different care facilities (nursing/skilled facilities/Assisted Living/Board and Care) are equipped to handle different ranges of care -- from low levels to care (which include different types of residential care of the elderly) to very complex and challenging care (in skilled care facilities). And these locations are staffed according to the complexity they expect (& the licensing required for that type of care). Assisted Living and residential care facilities for the elderly have different oversight from a licensing perspective than skilled facilities and because of this, one should do research in advance and tour places with many questions in hand.

I would advise anyone caring for an elder with a chronic or debilitating/worsening condition to really look into what an elder's diagnosis may entail in the future and then think about these hard questions in advance when touring facilities of all types. I added a photo of my own parents and me in this post. When their home life was settled (after 3 moves!) and they were well cared for, life was manageable... and happy. This for them meant a residential care facility with low levels of care but supplemented by in-home caregivers from an agency.

Taking care of family in home is wonderful for some and for others there are benefits of congregate living that make that worth investigating. Keep in mind what you can manage and afford, and always openly ask for help when you can and --wait for it -- be ready to pay for extra help or a change of location for care if needed.

Remember that it's important to be armed with facts and best/worst case scenarios. Also be ready to change a situation if it's warranted. The care of our family is of highest importance and making their home a "home" will make their lives longer in many cases, and more fulfilled in all cases.

Rosalyn Carter on Family Care and The Future

Soon my good friend and co-author, Gael Chiarella Alba and I will unveil our new book called “Fruits of Care: A User's Guide to Family Caregiving” to give caregivers a helpful guide during their time of need. The date of our book coming out is not yet released but I can expect early fall you will see more about it on this site (and other sites). The photo below is a page from the proof...it's been a wonderful work in progress.

It just so happens that on the back of our book, "Fruits of Care" is a terrific quote from Rosalynn Carter. Today I was delighted to see the eminent wife of Jimmy Carter speaking about caregivers with an audience of those in Iowa interviewing presidential candidates. She is a force to be reckoned with and is using her voice and position in society to advance caregiver interests. She also proposes current and new legislation and speaks to how to help caregivers in concrete ways.

She states, “As you prepare to interview and evaluate the next set of presidential candidates, I ask you to help me shine a spotlight on the more than 40 million Americans and over 300,000 Iowans who are family caregivers...You may not be one, but you most certainly know one. Caregivers are the selfless people who provide unpaid care for loved ones who are ill or have serious medical conditions." If you want to know more about this topic, see her website www.rosalynncarter.org or follow her on your favorite social media platform.

For more specific details about how the presidential candidates can be questioned about how they will respond to the needs of a future with more caregivers, see this link for First Lady Carter's Des Mois Register newspaper article

Alzheimer’s Care

I am enjoying the wonders of Teepa Snow in Santa Rosa in her talk about Alzheimer’s care. Her insights are brilliant with research and brain imaging shared, but the hard topics are always filled with humor and lots of finger motions!

This is an area I plan to explore further so stay tuned!

This November I look forward to helping all caregivers as a conference presenter at the NCCC 2019 in Chicago where I can help caregivers of all types!

The American's With Disabilities Act

Watching the Google Impact Challenge: Disabilities reminded me of how my own understanding of disabilities and accommodations has evolved. As an elementary aged child of a military family stationed in Hawaii in the 1970’s, I remember vividly having a disabled boy in my class who was confined to a wheelchair and had to use a catheter bag. I had never met anyone at that age who was in a wheelchair but when I look back now, I recognize how lucky I was to have had an inclusive classroom as a child – something many kids do not even have now! My school had an “old” campus without accommodations and a “new” side of the campus that had ramps and other physical changes to accommodate him and others with disabilities on my campus. This classmate of mine would not have known how much headway was approaching with the forthcoming Americans with Disabilities Act in our time together, but at the time we were in school in the 70’s, the law in place was called “Education for All Handicapped Children Act” which preceded the ADA from 1975 to 1990.

Fast forward to the era of the ADA passage in 1990 where I was an older teen and had just finished with high school. In those memories, I recall the changes in the curbs on streets in my new hometown in Arizona where my dad was nearly retired from the military and was serving on the City Board. I remember my father once complaining about the ADA and telling me about “unfunded mandates” and how he thought it was unfair that cities had to cover the cost for something that was the Federal government’s idea, even if it meant those who were disabled in our city could benefit. Although my dad and I tended to disagree on politics in much of my adulthood, he came around to appreciating the Americans with Disabilities Act. After a Parkinson’s Disease diagnosis for both my parents, they would need those curbs and handicap accessible ramps. And for me as their caregiver, I found that all of us could benefit from the ADA on streets, in businesses, and even at the beach using a beach “wheelchair”. It is helpful to know that in every city around the nation, the law has been mostly upheld in public spaces and that accessibility is increasing.

Before the ADA: The Recognition of A Need for Legislation
The biographical clips in the “Google Impact Challenge: Disabilities” were powerful since they honed in on the American Dream & the pre-ADA disparity for those with a disability. Judy Heumann cited the aspiration many Americans strive for -- wherein hard work translates to the ideal life. Yet instead she said that in those pre-ADA days, for her the reality was, “…if you had a disability, working hard and studying hard didn’t mean anything.” For former Senator Tom Harkin’s brother, having hearing loss meant his career options were extremely limited and he had little in the way of job choices before the ADA. In the days before the ADA Legislation was made into law, fulfilling careers for those with disabilities were unlikely. Ms. Heumann and others’ examples showed how just planning for jobs in the absence of accommodations meant overcoming problems with access as well as facing others’ biased and ignorance about disability.

After the Americans With Disabilities Act
With nearly two decades since the ADA Law’s passage, it is clear that inequities exist now. But the requirement that workplaces and local governments must abide by this law has paved the way for access, accommodations and legal recourse so that accountability to this law is upheld. In my own four decades since I was in elementary school, I have seen the ADA’s benefits in terms of employment and recreational/leisure opportunities that make it possible to see how inclusion is possible and increasing. I especially liked the quote from Tatyana McFadden, a Paralympian who seemed to feel there was unlimited potential for those with disabilities when she stated, “We have a right to do everything and anything that we want and it’s because of the ADA.” The promise of the ADA Law is still alive and well. But along with the progress made since days past, is the challenges wrought in the present.

How the ADA Affects Me: Caregiver Advocacy & Teaching About Disability Awareness
I studied family caregiving for my dissertation and since I graduated in 2013, I have been speaking to support groups when I have time. This means that for my talks I need to know about topics like accessible “Family Bathrooms” and inclusive leisure locations (including movie theaters and bowling alleys). Many times caregivers don’t know about activities and placesthey can go with their family member with a disability because they are not aware of the reach of the ADA and how many places have accommodations. I've also been studying Autism Spectrum Disorder (ASD) this year with a program at the MIND Institute. I’ve become aware of Educational funding for special education services and how IDEA Laws improved services for those with disabilities in schools. The ADA affects those with Autism and other disabilities because of its assurances of things as small as access and as big as employment opportunities that have allowances for accommodations. I looked specifically at Autism and Intellectual Disability this year in the MIND Institute Program and found how many of those entering adulthood with this type of disability face an increased unemployment outlook. Many hiring directors in workplaces have misconceptions about the potential of those with Intellectual Disability and may not consider ways they can contribute in a meaningful way.

Finally, I wrote a children’s book about disability awareness called, My Grandpa Wants to Get a Porcupine for which I offer workshops to kids, senior communities, and support groups with a message of inclusion. For adults, to increase awareness requires a strong understanding of current discrimination and bias. This is something that American society needs to face head on, and it often means looking at unconscious fears of the disabled that many may harbor without knowing it. The feedback I get from my workshops, for adults and kids alike, shows me that acceptance can happen but it is slow and greater visibility and awareness only helps everyone see we are all alike. I know that explaining the ADA is a helpful addition to the curriculum I can teach (including at an upcoming elementary program I’ll offer at a local school near my home this May).

Below is an ad for the ADA Expo near my home which featured local vendors who have assistive devices and services. Companies like these have given support and are what makes the ADA continue to flourish today in helping those with disabilities.

Self-Care for Care Givers

This photo below is of me holding a "Self-Care" shirt that I bought for a friend who has two children with Autism and two typical children. This friend was explaining to me the trials of parenting two special needs children and how it varies from the parenting of two typical kids. I feel helpless as a friend to find the right words and I'm not close by to support this friend who is a 6 hour drive away...but somehow mailing her this shirt made me feel better (& made her laugh - especially when the shirt in "Extra Large" was something like a normal mom's "Medium"). We both got a good laugh and had a way to talk about self-care without making it feel forced.

It's not selfish for a caregiver to take care of self. These are not massages and facials for most -- as an overwhelmed caregiver small actions that invite reflection, space for rest, and just plain joy that feels like a thing of the past should be made to fit on the schedule. Looking into babysitters, formal respite care services (if they are part of care plan) or just friends or family to help you support your loved one should not invite guilt. I assure you that you will feel better with time to regroup.

Don't brush self-care aside...I may have to send you a tee shirt, too, to remind you how important this is!