The Family Caregiver Platform Project

It's Time To Take A Stand For Caregivers

My Caregiving Journey 

The Invisible Caregiver

I have had many careers in my life, from working in the corporate world to raising an amazing daughter, and today I find myself as the sole caregiver for my elderly mom. Macular degeneration has taken her eyesight and she has a neurocognitive disorder otherwise known as dementia. She will never "get better" if anything she is deteriorating right before my eyes. To the dismay of many of my friends and family they all tell me she needs to be in a nursing home. She definitely meets the criteria but in my heart I can not do it. She is quite the kicker and I fear that her challenging behavior will not make her one of the popular kids in a nursing institution. Therefore the care and safety of my mother is a high priority. A few years ago she was in and out of the geri go round. I have memories of finding soaked urine sheets in her in drawers. Their website brand promise states "Bringing new life to senior living" they are known to highly regarded skilled nursing facility in Del Mar, California and after the care my mom got there they were doing everything for her except bringing a new life to her "senior" living. So I need not reiterate but we are talking about my mother, the person that gave me life and the one that nurtured, fed and kept me safe. For me to 'put her away' is just not an option, or am I kidding myself and sooner or later before I crash and burn will I need to put her in some institution.

Caregivers Need Help 

And One Day I Became A Caregiver

As I started this journey little did I know that our country does not make it easier for families to care for a loved one at home, in fact caregivers that are family and live in the same household are more or less an invisible group. And what is most baffling is that more and more people are aging and will need to be cared for at some point. Fact is that if a person is placed in an institution the cost is much higher to society. And I say that in more ways than one. We need to work together to imagine systems and services that will provide and help the family caregivers who need both financial and practical support in order to provide the care the older adults in their lives need to age in dignity. We must bring light to the invisible caregiver.

Addressing our aging population and their caregivers is not a
Republican issue, or a Democrat issue – 

It’s a people issue

By working together, we can make the care system better for all of us, starting now.

Think about the Beauty in Aging

Think About Aging

As millions of Americans grow older, 7 out of 10 of us will need assistance from another person. We will need help with simple activities such as eating, bathing, and moving from place to place. Some of us will only need care for a short time, but others will need help for years. Some elders will have loved ones close by who can help when needed. But many will lack a reliable support network. That’s why we need a community that cares.

Consider these facts About Aging in America: 

• Caregiving in the US in 2015, 43.5 million Americans provide unpaid care to someone who was/is ill, disabled or aged.
• AARP -Valuing the Invaluable- Caregiver services were valued at $470 billion per year in 2013.
• Women Work and Caregiving- One national study on women and caregiving highlighted the conflicting demands of work and eldercare.
   The study found that:
  • 33% of working women decreased work hours
  • 29% passed up a job promotion, training or assignment
  • 22% took a leave of absence
  • 20% switched from full-time to part-time employment
  • 16% quit their jobs
  • 13% retired early
• Family Caregiver Alliance- Loss Term Statistics
• Individuals 85 years and older, the oldest old, are one of the fastest growing segments of the population.
• This figure is expected to increase to 19.4 million by 2050.
• In 2012, there were an estimated 5.9 million people 85+ in the United States.
• This means that there could be an increase from 1.6 million to 6.2 million people age 85 or over with severe or moderate memory impairment in 20
• AARP Virginia- AARP Virginia Asking Lawmakers to Help Caregivers
  • AARP volunteers will urge lawmakers to increase funding for the Department for Aging and Rehabilitative Services’ Lifespan Respite Care Voucher Program.
  • There are approximately 1.3 million family caregivers in Virginia
  • Volunteers also will urge lawmakers to take advantage of enhanced federal funding to provide Medicaid coverage for up to 400,000 additional individuals, including 62,000 people age 50 to 64
  • AARP Virginia State Advocacy Director David DeBiasi sats that “It is vital to helping caregivers maintain their health and makes it easier for families to care for their loved ones in their own homes, as opposed to expensive long-term care facilities”

The Family Caregiver Platform Project! 

Get family caregiving into your state party platform

The Time is Now that the Family Caregiver needs to be recognized. This is a nonpartisan project, reaching out to all political parties. We are at a moment where the American people must lead a cultural shift to demand better care for our most vulnerable citizens, our families. And caregivers issues need to be heard at the local, state, and national level. From grassroots efforts to educate and motivate policymakers we must help to improve state and federal support for family caregivers and the frail elderly Americans for whom we selflessly provide support.

Conversations are taking place at the state level through the FCPP by the Caregiver Corps.The goal is to tell policymakers about the importance of supporting family caregivers, both from a humanitarian and a fiscal perspective. We are encouraging family caregiver support to be included in all state party policy platforms. A new website, CaregiverCorps.org, is organizing these efforts.

What Can WE Do? 

Visit CaregiverCorps.org to learn how to encourage public policy in your community. This is such a vital movement especially for us who are the invisible caregivers WE can and need to be heard. Lets all join together and create Volunteer “Caregiver Corps” in our communities, and lets not miss out on using the power of a hashtag on social sites online. Maybe I belong to the #CaregiverCorps!
State party platform are working round the clock right now and committees are convening and discussing what language will be included in their party statements about key issues. Aging in America with Dignity should be on everyones agenda. Just remember we all get old, so your party doesn't matter, but what does is that we are heard.

This quote I read from Kevin Prindiville really sums it up for me perfectly. Kevin is  the Executive Director Justice in Aging, and if you are a caregiver like me you will want to bookmark this website.

“When older people are able to receive the long-term services and supports they need to age at home and in their communities, they not only have better health outcomes, but richer lives. By ensuring older adults remain an integral part of our families and communities, our lives are richer. Family caregivers need both financial and practical support in order to provide the care the older adults in their lives need to age in dignity. This is an issue that touches us all and highlights our interdependence. If we all work together, we can find and enact policy solutions at both the state and federal level.” 

Challenging Behaviors in Dementia

Why My Mom Walks Back and Forth
Wandering and Pacing

My mother has dementia and she also has macular degeneration which has left her with very very low vision (if any) so I am sure one can understand that having to take care of someone like this presents many different challenging behaviors. In the case of my mom she spends much of her day pacing back and forth. Continually she walks back and forth, around and around, as far as she can go and then back again. For me just watching her brings me to the point of exhaustion. Why she does not want to (or maybe she isn't be able to) sit down and relax is something I will never understand, though I try.

Wandering

 We have had a few episodes where she has made it out the door and off she goes on what I call her walkabout. New to Virginia Beach, we were staying at a friends house at the beach while I was in the process of looking for a place for us to live. In any event on this day I was emptying the groceries out of the car and of course I walked her into the house and got her comfortable. Or so I thought, for when I went for the 2nd trip to the car she made her escape and went out the patio door. When everything was out of the car I went to ask her if she wanted a snack, problem was I could not find her. To make this story short, immediately I called the police and they immediately had the beach helicopters, dune buggies and patrol men searching for her. She was found hiding under a dune a good 20 blocks from the house within an half hour. The fear and relief that took over me is pretty indescribable. But thank god she was found and quickly! So I knew I now had a challenge with a new priority on my list of what and where we would live. Sadly it was not going to be anywhere near the beach! Eventually I found a nice community that is more or less a maze to get in and out of. So if she does get by me and out the door she can't get very far and she certainly won't get to the entrance of the development before I find her or a neighbor sees her. I thank my lucky stars that her wandering has happened only a few times. Anyway, the walk abouts are under control these days but the pacing exhausts me. And it is one of dementia's challenging behavior I desperately would love to understand.

One thing I do know is my mother has also been a 'runner" and I don't mean like in exercise. It's more like she always needed to be someplace, usually it had to do with shopping or running off to a casino. But in the last few years between the dementia and her vision loss shopping and casinos are not on her agenda.

 Pacing 

While no one seems to know what causes pacing in dementia, experts have said that in every case, elderly pacing is a repetitive behavior and may be related to the following triggers or conditions:

• Pain or discomfort (something she has trouble conveying to me) 
• A need for exercise (physically she is fit but if I do take her for a walk she moans and groans and wants to go home) 
• Searching for something familiar (may be consciously doing so or not) 
• Boredom (this I think applies to my mom but then again she never had many interests) 
• Anxiety 
• Hunger or thirst (feeding her usually works but sometimes paces in between bites)
• Need for the bathroom 
• Disorientation 
• Sometimes I think she just may want company, and is pacing to get attention and company.

Best Advice for Responding to Pacing 

This is a hard one for me as her sole caregiver when I hear or see her as she goes back and forth and then back and forth again it automatically raises my anxiety level. And when I say that I can't even believe but the anxiety I feel is off the charts. And whatever it is I am doing it always disrupts my thinking which means whatever it is I am doing either doesn't get done or I make a mistake. Talk about challenging behaviors!  What I have learned is the following:

• Don't try to force her to sit down. (because I know she will do the opposite)
• Try playing calming music for distraction.
• Try to figure out if she is not in pain. (not an easy task but one to look out for)
• Direct her to the bathroom in case he needs to use it.
• Offer meaningful activities that engage him. ( I have tried audio books but her attention span is short lived and not many things seem to interest her)
• If I can I try to sit with her as she probably just wants someone to be with.

 Caregiver Inspiration

As I was researching this behavior I came across this gem. It is a poem by by Norman McNamara and it really made me think and understand why my mom sometimes Wanders and asks repetitive questions.

When I Wander

A Special Place for Caregivers

We All Need Support and Inspiration 

 If you are a caregiver like me, life can become a very lonely place. Especially if you are taking care of an elderly person who has dementia. In my case it's my mom whom I take care of. Along with dementia she is more or less blind. And let me tell you, going places with her can be quite the challenge. And one that becomes more work than fun. Staying home in the comfort of safety becomes the norm.

I must say thank goodness for the internet, for I can pretty much go anywhere in the world

I want! I have actually told friends I have probably been more places in a day than they have without leaving my house!

A challenge I have found is that with baby boomers caring for their parents on the rise a google search gives you an overwhelming amount of websites for caregiving. Sure that is a good thing but the internet has become a myriad of caregiving sites. And each and every one of them brag about the advice and information that will solve all your problems. Honestly navigating through them all I have felt many times more confused than when I began.

I have been on them all. From Alzheimer’s Association, AARP to Daily Caring they are all comprehensive and give you, the caregiver lots of good general information. But you see the problem was I never felt connected and if I had a question I had to keep digging and digging and it became exhausting. And then of course there  are the government websites like Medicare and other state health insurance assistance programs, but they just take you in a never ever ending circle. So you are left alone trying to swim in this huge growing ocean of how to survive taking care of someone that so desperately needs you. The sad part is you are probably like me and shooting from the hip and then wondering,  now what.

And then one day I found Caregiving.com. Its motto is "Caring for you as you care for family".  This is a website that if you dont take 2 minutes and sign up you are doing yourself an injustice. I am guilty of the above. Honestly when I first landed on the website it felt different. It asked me to register and I immediately clicked off. I really can't tell you why I did that because it does not cost anything to sign up, I just guess I wanted instant gratification and didn't want my email bogged down by another site that I might have no interest in. But somehow a little while later, maybe even a day or two as luck would have it,  I ended up back on that pretty site. Now mind you, these days I am really feeling challenged as my caregiver responsibilities are getting harder and harder, so you must understand I was in serious need of some help and support. Desperate might be a better word to describe how I was feeling. Little did I know finally I was where I needed to be.

So Caregiving.com was debuted in 1996 and the first online support group was launched in the fall. The founder of this site is Denise M. Brown. To put it bluntly she is a leading expert in the field of caregiving. The way I see her, she is the pro of helping others on the journey of managing life as a caregiver. Her knowledge and insights have been featured in The New York Times, US News & World Report as well as the many books, she has written for and about Caregiving. The information she shares in her books like  The Caregiving Years, Six Stages to a Meaningful Journey and Take Comfort, Reflections of Hope for Caregivers all provide insights, inspirations and such important and needed information to those who care for family members.

I'm A Family Caregiver- What's Your Superpower?

 I can go on and on about all the reasons you should become a part of this community if you are a caregiver, for honestly I have yet to find a site for caregivers that even comes close to this gem. The website is more than just a website, it is a community. And one that features so many resources, like blogs of other family caregivers, daily, weekly and monthly real time chats with others, clubs of comforts and inspiration, there are free webinars, free weekly self-care plans and so much more. Imagine finding a place you can go with an active caring community all of whom are going through or have been through many of the challenges you are confronting. They welcome you in and then they take it a step further and make you feel like you have an anchor to grab onto. Let me tell you  in this big deep ocean of caregiving it has been my saving grace. Every step of the way you feel like you have found a place that will help you ease the stress of daily care-giving and remind you that you are not alone.

And you can bet you will find Denise herself at many of these chats. Why not come over and join us?

What Do You Do When Your Aging Parents Need Help

Becoming A Caregiver

"In this life we cannot do great things.

 We can only do small things with great love."

When I began my journey taking care of my parents so many people kept asking me how I could do such a thing, that they would never be able to do that. Because when parents get old and can't take care of themselves there are nursing homes for that. For me that was not not is it an option for me. To me they are my family and family takes care of their own. The deeper explanation is, they did it for me. From the time I was born my parents have been there caring for me. THEY changed my diapers. THEY fed me. THEY dressed me. THEY bathed me. I spit up and threw up on THEM. I bled on THEM. When I cried THEY comforted me. THEY taught me and they encouraged me. Supported me and loved me.

Today my mom has dementia and macular degeneration has taken away her sight. She needs care 24/7 and I am the sole caregiver.

 So now it is my turn and to reciprocate when it's their time of need.