A Tribute to Care Partners

                          

 

 

 

 

 

 

                                                                                

 

This post includes information from the Caregiver Action Network* site, to which all those who benefit from the support of caregivers are indebted.  This important information is included on their website:

• There are as many as 90 million family caregivers in the U.S. today.
• Two out of every 5 adults are family caregivers: 39% of all adult Americans are caring for a loved one who is sick or disabled – up from 30% in 2010.
• And it’s not just women doing the caregiving: Men are now almost as likely to say they are family caregivers as women are (37% of men; 40% of women). And 36% of younger Americans between ages 18 and 29 are family caregivers as well.
• Family caregiving is serious work: Almost half of family caregivers perform complex medical/nursing tasks for their loved ones – such as managing multiple medications, providing wound care, and operating specialized medical equipment. 
• Family caregivers are the backbone of the Nation’s long-term care system: Family caregivers provide $450 billion worth of unpaid care each year. That’s more than total Medicaid funding, and twice as much as homecare and nursing home services combined. 

We in the Parkinson's world refer to caregivers as care partners in order to emphasize the joint involvement of patient and care partner.  We recognize that care partners come in a variety of "shapes and sizes", including women, men, family members, or friends  We also need to pay tribute to the important roles played by paid homecare, assisted living, or nursing home staff, many of whom are driven primarily by their desire to care for others.

 

I have written recommendations for PWPs and care partners in previous blog posts that include thoughts priorities for each group as well as how they can support each other.   Mutual support, communication, patience, teamwork, and love are hallmarks of a desirable PWP/care partner relationship.  I would emphasize the desirable part of that statement while recognizing that we are all human and that there are forces at work that can make this difficult on any given day.  The important thing, I think, is that when we "stray off course" to recognize the importance to both parties of returning to that mindset as soon as possible.  If we have times when that is difficult, it is important to be willing to reach out to resources like support groups, "umbrella" organizations (like Parkinson Association of the Rockies in our area), clergy, family, or friends.  We are not in this alone!

In my case, I am extraordinarily fortunate to have the best caregiver I could ever hope for, my wife of 44 years, Linda.  As a former social worker, it is her nature to care for others and put their needs ahead of her own.  While we have our ups and downs (see the previous paragraph) like anyone else, we are blessed by mutual love, devotion, support of family and friends, and shared faith that serves as our "true north".  Importantly, we are also both involved in and committed to supporting our local support group in Highlands Ranch, Bionic Brigade (the Denver area DBS support group), Parkinson Association of the Rockies (PAR), a new care partner support group, and the Parkinson Disease Foundation (PDF) patient research advocacy program, as well as remaining involved in community support programs through our church.

One of the ways Linda displays her patience is by allowing me to spend hours at my computer working on my writing, which currently includes this blog and finishing a new book titled Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia**.  She did the same as I wrote my PD-related children's books***in 2011 and earlier this year (the new one focuses on the role of care partners as well as other PD issues).  We travelled together to the recent World Parkinson Congress in Montreal.

 



She demonstrates her commitment to my well-being by encouraging me to join her for walks, bike rides, or to work out at our local recreation center.  She is my golf partner, camping buddy, and travel companion (we have a trip to Shanghai planned to visit our son and family next March).  Since I only drive very short distances infrequently, she is also my chauffeur. 

I would invite all my PWP friends to go out of their way in November (and in the months that follow) to find ways both subtle and overt to express our love and appreciation to those who are devoting their lives to us, often at the expense of their own interests.  Finally, we need to recognize that PWPs have a caregiver role to play by ensuring that our partner's wellness is not overlooked.  After all, where would we be without them? 
 

 

* The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the more than 65 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
**Not yet released
***Kirk's children's books are books one and two in his "Shaky Paws Grampa" series titled Carson And His Shaky Paws Grampa (http://www.innovopublishing.com/innovo-store/digital-titles/product/190-carson-and-his-shaky-paws-grampa-by-kirk-hall-paperback-edition.html) and Carina And Her Care Partner Gramma (http://www.innovopublishing.com/innovo-store/digital-titles/product/343-carina-and-her-care-partner-gramma-by-kirk-hall-hardback.html).





World Parkinson Congress Highlights

 

 

Linda and I went to the World Parkinson Congress in Montreal recently.  It was our first time attending this amazing event attended by PWPs, care partners, PD organizations, doctors and researchers from all over the world.  The last one was held in 2010 in Glasgow, Scotland.

We arrived on Saturday before the Congress started in order to participate in the Parkinson Disease Foundation (PDF) Parkinson Study Group (PSG) meetings.  There are seven different research groups that address a variety of different PD categories.  This year for the first time, we were invited to participate along with other PAIR (Parkinson Advocates In Research) members to provide "patient input".  We sat in on the Neurosurgical group and Cognitive/Psychiatric group meetings and appreciated the opportunity to interact with doctors and researchers from all over the U.S.

This new development is part of movement toward more patient engagement in the PD world.  It is encouraging for PWPs like me that there is a recognition of the value of including patients in the research process as well as placing an emphasis on patient-centered approaches to medical services.

We attended pre-congress presentations on Tuesday and the opening ceremony on Tuesday night where we heard a variety of very inspirational speeches from organizers and PWPs.  On Wednesday, Thursday, and Friday we attended large group sessions in the morning and then selected two workshops each afternoon on topics of interest.  Between sessions, we spent time on the "floor" of the convention where the PD organizations had booths and hundreds of posters were on display that covered a wide range of subject matter.  There was also a "research village" where I participated on a panel Friday morning.

One of the big topics being discussed was the role of alpha-synuclein in progression of PD and cognitive diseases.  These are proteins that develop into clumps forming lewy bodies.  Part of the discussion involves evidence that these problems may start in the gut and then migrate through the spinal canal to the brain.  Research is also being devoted to slow down or stop the migration of alpha-synuclein from one cell to another causing formation of lewy bodies.

In addition to what we were able to learn, a huge benefit we experienced by attending the WPC was the energy and strong sense of community we experienced there.  It was great to spend time with people we already know and see infrequently, and especially invigorating to meet so many new people that will become part of our network.  At the end of the day, we are one big family all reaching out to support and care for each other in different ways. 


If you were unable to go, you can still visit the WPC website and hear many webinars at http://www.worldpdcongress.org/ that include the opening ceremony, keynote speeches, and cutting edge presentations on a variety of important subjects form world-class presenters.

The next World Parkinson Congress will be held in 2016 in Portland, Oregon.  It is definitely a worthwhile trip!