A fork in the road
After having recently finished Tara Mohr’s Playing Big, a book I highly recommend (note: it’s written for a female audience), there’s a line that repeatedly keeps playing audibly in my head.
The line is “my slice of the truth to tell”.
Tara’s reference in this comment addresses a common misconception among women that if they don’t have a degree or are not certified or an “expert” in something then they don’t feel “qualified” to be able to speak or share ideas on the subject. I know, that in my own life, this is truer than true.
I call myself a coach for lack of a better title but I do not have a coaching certificate. (Which is frankly why I hesitate to use the title). When I went through the process involving the research and expense of a coaching certification I realized, early on and very quickly, that I wanted the strength of my services to come from my diverse passions and interests and to be less rooted in any one specific program or method.
Learning is a strength of mine; I’m always in study of something new that fascinates me and I incorporate as much of that knowledge into my work. I allow my life’s experiences to take me in what ever direction I’m intended to flow. Sometimes that direction surprises me.
Sometimes it takes me to places I never intended to go. I’ve recently had a fork in efforts that has caught me off guard and made me feel that sense of “Who am I?” to which I now respond…THIS is my truth.
The essence and root for me of “my slice of the truth to tell”, as I personalize Tara’s words, are that my own personal experiences are enough for me to speak from because they are my experiences. There is no one else on this planet like me (or like any of us) therefore, the experience I have is unique. That I have the lens and the ability, permission and dare I say, responsibility to share my view.
This was reinforced last night, before I sit today writing this, by a line in my Desire Map planner that said “Your scars are someone else’s signs of hope”.
As a result, this post will follow one prong of the new fork because, at the primary moment, the lightening bolt that has hit me on this very close-to-home topic, is all consuming.
My beloved mother, Sonjie (SON-ya), has Frontotemporal demential (FTD) aka Pick’s disease. By as much as my family can calculate going back to really early symptoms we mistook as something else, we think perhaps she’s been sick for 9 years or so. She was officially diagnosed 3 years ago.
Dementia itself is not a disease, it’s a description of a collection of diseases that all have common symptoms including memory loss and lack of ability to execute on the normal tasks of day-to-day living. Alzheimer’s is the most common.
Pick’s disease affects the frontal lobe of the brain first and most significantly. This part of our brain is the part that controls personality, emotions, behavior and language. We first noticed an issue when it was obvious in her language.
It was, however, when we connected the symptoms backwards across time that we realized a lot of my mom’s idiosyncrasies were connected to this disease. I’m not sure if this common or not, as it’s not the simplest to research however with my mom, what’s happened is that all of her uniques qualities, things as a child that would make me roll my eyes and say “oh, Mom…” have been exponentially amplified.
One example is her desire to make sure everything looks "right". Whether it’s on her person, or in her home; presentation has always been important to my mother. She was hyper-vigilant when I was a child.
With her disease, this manifests in the inability for her to sit still. She’s always fussing with this and that. Or when someone like me, her comparatively messy and expansive daughter shows up and puts things here and there, I can’t tell you how often they disappear because she has “stashed” them away to keep things clean.
Over the course of time, watching my mother’s disease progress, especially at a distance (she’s in New Hampshire and I’m in Washington state), has been - well, everything you would expect it to be.
There have been moments, because it’s not 100% in front of me, that I can live my normal day-to-day without much disruption and days when I feel helpless because my capacity to be there is limited by time, resources and a 6+ hour plane flight.
It’s only recently, as my mom's decline has been more pronounced and we are getting into the thick of needing more help; as our conversations have gotten less and less and the ones I have with my dad have become more ominous, that the gravity of the situation is weighing heavy.
A I prepare for a trip a to see my parents in less than a week, the immenseness of what I’m flying into is hitting me. My mother has recently been further affected by a series of mini strokes which left her brain bleeding which even more deeply diminished her already limited physical resources.
My family is remarkable. She’s surrounded by 3 of my 4 amazing brothers and sisters and their spouses and some life-long friends who have also been a tremendous amount of love and support.
My other "out-of-town" sister from Denver was just there last week during my mom's week of rehabilitation making plans for the inevitable with the local funeral home and talking to social workers trying to gather as much information to plan ahead as possible.
Being so far away, it’s been challenging to avoid guilt. As a result of my distance, I’m finding myself turning to the internet to try and help close gaps and solve problems that have arisen as her health continues to decline.
What I have found is a terribly broken and confusing system and, gratefully, a whole host of advocacy groups trying to make a difference.
I’ve always been bothered by the fact that as we age, we are asked to make decisions for our future; decisions that have a massive financial and legal impacts on our comfort and security in our elder years.
These decisions require a lawyer and a financial planner and one more key thing, foresight.
We know now that we are supposed to “save for our future” and it wasn’t the kind of knowledge my 80-year old father or even my 69-year old mother grew up with.
It wasn’t until my dad’s final job in his career that he had a 401K plan and then he stashed away the maximum amount. At the maximum it wasn’t going to make up the gap in time where a retirement account didn’t exist.
Knowing I’ve heard stories like this in the past from others, I dug in and did some research. It won’t likely surprise you that our population is living longer. What might surprise you is the Alzheimer’s Association quotes that 1 in 3 aging adults will have some form of dementia.
Dementia diseases are incurable. If all the primary caregivers of adults with dementia (like my father who up until a few weeks ago was my mom’s primary caregiver) were paid, it would be valued at approximately $450 billion dollars and raise the cost of money spent on dementia care (vs. what’s nationally funded by Medicaid) by 116%. (www.TheSCANFoundation.org- Who pays for Long-Term Care?)
All those sobering facts and statistics can be found on the internet.
Here’s my version:
My parents will have to spend half of their estate in it’s entirety (until they can prove that half of the estate has less than $2,500 total) before Medicaid will kick in because their Medicare insurance my dad just switched to in order to save some money is now essentially worthless for my mom’s condition.
At present, my parents have to make themselves poor. The money they have to spend won’t be spent on anything to celebrate their upcoming 45th wedding anniversary; it will be spent on installing railings and safety equipment in their home and the $4,000 a week, 24-hour nursing care that they need to ensure both of my parents are safe and comfortable, which again isn’t covered by their insurance. (My dad, at 80, with his own health problems is no longer capable of caring for my mom in her declined state.)
They will pay for in-home nursing care until we can get my mom a bed in a facility, somewhere, any of which is about $10,000/month until Medicaid kicks in (assuming the place we get accepts Medicaid) which essentially cuts the in home expense to about half and extends how long my mom can have the help she requires.
All the places locally where she is on a “waitlist” gave us a timeline for availability of approximately one year. We’ve been told the Medicaid approval process can take anywhere between 6-9 months.
If you’re doing the math with me on the expense and the approval timelines, my parents would need to have at least $120,000 in the bank just to cover my mom’s care (and nothing else) until they can get government help. My parents don’t have that kind of money.
So then what?
I don’t know. That’s what.
After reading the NH State Plan on Aging written by the Department of Health and Human Services (DHHS) and the Bureau of Elderly and Aging Services (BEAS) - (Side note: there are more acroymns in this system than when I was working at Microsoft, T-Mobile and Expedia Inc. combined, to the point where I had to make myself a glossary just to read the documents. I wish I was joking.)
It’s on the second page of actual content in the plan that references the budget cuts and hiring freeze which had left the NH State DHHS department running with 350 vacant positions (as of the writing of the document a few years back). It’s no wonder I haven’t gotten a call back from anyone when I called to ask about navigating this complex and broken system. Did I mention that the aging population is growing exponentially? I’m sensing a huge divide in the people who need help and the ones who are in a position to actually help.
There are resources in the market you can pay for; consultants and the like who specialize in helping families like ours navigate these waters but what happens in families that are less resourced than my parents?
My heart hurts as I write these words and it’s hard for me to go a day without tears; not only for my mom but for all of the other people in similar situations who don’t have my families’ time, resources and connections. My sister-in-law has been a hero. My mom calls her the sweet lady because she can’t remember her name. Honestly, when I see her next week, I don’t know if she will remember mine.
It doesn't matter to me if she knows my name. I'm grateful to have the opportunity to hold her hand and to smile at her and love on her. I'm grateful to have the resources to see long-term care facilities side by side with my dad and hopefully be in a position to hold space for him to grieve. Something he hasn't really had a chance to do.
Dementia has stolen my mother piece by piece. It has also stolen the life my parents dreamed of post retirement.
The system that is supposed to be available to take care of her is broken.
My mom has more help and champions than most and we are still struggling, frustrated and tired and I’m not even in the thick of it. My heart breaks for all of it.
There has to be a better way. I have no idea at the moment what that it is.
I don't know where to start. I don't know what steps to take. I know only that there's a problem and I'm engulfed by a desire to fix it. I have no idea where this desire will lead.
If I’ve learned anything in my journey, it’s that when I get really emotional about something; it’s a sign and one I can’t ignore.
I'll continue to do what I always do; I'm asking each day for the divine and infinite intelligence of the universe to guide me to where I can do my best work and as opportunities make themselves known, I'll lean in and learn and I'll keep sharing it.
Because I'm the only me there will ever be and this is how I do my work in the world.
In continued love and gratitude for you and your family,