Help Give our Daddy Music, Sleep & Safety

My daddy is dying by craziness. Truly.  We have known this for awhile. The most pure, kind, selfless, silly & loving musical man was diagnosed with early-onset dementia (Alzheimer's) a few years ago in his late fifties. But that's not why I'm asking for help.


My daddy never met a stranger. My daddy went undiagnosed for years because he was simply so silly and gregarious everyone was used to him breaking into Frank Sinatra in what were perhaps inappropriate situations.




My daddy fixed music equipment for a living his entire life. He was content to play his music in clubs as a "weekend warrior" with his buddies and make his modest wage in the day to support his family fixing instruments & equipment among many other things that create the thing he loves the most: music. (Ideally Bruce Hornsby, The Beatles, Hendrix or some variation of the 3.  At one point listening to  "Mandolin Rain" was the only thing that calmed him.)

Lover of old radios, vinyl records and all things Andy Griffith, rescue dogs and Disney-in my entire life I've never seen him raise his voice aside from yelling the NANANA's of Hey Jude during our father-daughter dance.

My daddy adopted legally and emotionally my big sister Laila when he married my mother and raised her as his flesh and blood.

Here they are at her wedding, dancing to Frank Sinatra>


My daddy was the legal witness to his ex-wife (my mommy) and her future husband's (my step daddy Robert) wedding ceremony.  

>Here's my mommy and daddy holding each other at the courthouse at my mom's second wedding to my beloved stepdad (another selfless man and ER doctor here in Nashville).


Here is my dad and step daddy day drinking on the back porch right before he entered the memory care home that nearly took him from us (sound up to enjoy the best INAGODADAVIDA BABY of your life:


He is the kind of human who you know will go (should you believe in such things) straight past go and on to Heaven.

But his nursing home in Bellevue, the place we agonized over sending him to but were promised safety, support and above all HEALTH....nearly killed him. I will not go into it here as that is not my goal in this HOWEVER- if you have concern over a loved one in a home (even the "good" ones) please reach out to me to hear our stories and in particular the horror of haldol.  Once Covid started-we knew we weren't going to be allowed to see him. This is happening all over the country, one of the many side effects of this evil pandemic.

What we didn't know was that the care center outside of the watchful eye of his family would sedate him so heavily on a antipsychotic, as he is so young and able and ambulatory (very inconvenient for them), they would no longer allow us to FaceTime him at will as to not see how they were keeping him.  In fact after meeting with a psychiatrist for follow-up she immediately halved his dose.
He went from this:





To this.

 

All that matters is this, without knowing how in the HELL we're going to handle this-we got him back.  When they brought him out to us he rounded the corner shuffling, unable to make eye contact, unable to walk without being held up by two staff members. We got him in the car somehow and buckled him in. He could say very few words. He was a ghost. 


Within 1 hour of being home with a little assistance he devoured an entire sub from Jersey Mike's and a box of his favorite candy, Whoppers.  We had been told he was "eating great" but somehow managed to come home to us weighing less than 150 pounds.  The angel whistleblower informed us right before we removed him that he seemed to have forgotten how to chew and swallow because he was so heavily sedated.

Within hours of him being home and under medical advice skipping the 2nd dose of Haldol he was making eye contact, reaching out to keep his grandbabies  from bumping into the coffee table while playing, making jokes and quoting Forrest Gump.He FaceTimed with his buddy Bob Cheevers and while still cloudy could bust out in song to the "yahh-yahhhs" of Michael McDonald.   He greeted visitors with his usual loving kindness, suddenly able to stand and walk unassissted.  He even followed my mom down the driveway as she pulled away to make sure he told her he loved her.  He was coming back to us!

Had we done what the facility told us...had we not had insider information and a GUT FEELING....we would have assumed this was just his disease. This was just the evil journey of dementia and there was nothing to be done but mourn and make him comfortable.

No.

The problem with my dad is he is young and healthy and extremely inconvenient for them. They're used to very old, very frail, very sedate humans. They promised us a level of care that would offer him support, presence, respect, care and constant communication with his family. They failed. They were inconvenienced and understaffed and unwilling to listen to their own employees who voiced their concerns.

They were slowly killing him.

But here we are now and here is the point of this entire thing.

I have done gofundme's before and have raised money for other people. It is EXTREMELY humbling to need help.

But I am begging you for help. We have to keep him home with us until Covid is over. This could be months and months. We need to heal this beautiful man with us. We need to heal his trauma and after months of literally being left to float in hell and without a familiar face-he needs to be home with us.  We aren't in denial about his disease, we know it progresses and will continue to be heartbreaking.  But we also know he deserves a quality of life that he was being robbed of in that place.

But we (my siblings Laila & Nathan) and I simply cannot do it alone.  He needs 24/7 care for some obvious reasons and others I will respect his dignity and not divulge.  In order for this to happen it will cost a MINIMUM $13,000 a month. We are desperate to hire on people like the selfless employee who advocated for him and is now no longer with the facility. But these people deserve a decent wage, we have tried the more "affordable route" only to have people never show up or literally walk out on us because something that paid more came along.  We ourselves have to work or we lose the home and space that allows him to even be with us and survive this pandemic. 

This is an AWFUL time to ask for charity-I know this. If you have nothing to give please don't you dare try but even if you can vouch for this man's kindness and humanity.  If he's ever done anything for you or your family or anyone in my family has I beg you...help me keep him home and safe-at least until this hell on earth that is Coronavirus quarantine is over. There are so many ways that Covid kills, some are sneakier than others. 

Here are the three things we need for him most: 

1. SLEEP

What we need right now more than anything (aside from caretakers) is a hospital bed. He is less steady on his feet at night due to the sundowning that occurs with dementia as well as the medications he takes for sleep.  While we are thrilled that he is gaining his weight back trying to pull him in and out of bed to get to the bathroom 4x a night is miserable. If we could even fix this somewhat simple problem it would buy us precious time at home because we would have the flexibility to have in home caregivers who could actually keep him (and themselves) safe. These beds cost anywhere from $500- $10,000.

Here's a picture of my brother sleeping on my couch right outside of his bed on his "daddy shift". To be able to have the capability to take daddy in and out of bed more easily will allow us to get "somewhat" of a better night's sleep when we're on our overnight shift.  Myself, my mom, my sister and brother all take shifts sleeping on the couch outside of his room so that when his alarm goes off we can scramble to his bedside before he falls out and hurts himself.



2. CARETAKERS

I spoke about this on facebook. We get so many "yes please we want the work!" messages and the follow through has been heartbreaking.  No shows rampant.  Secret smokers (I'm allergic unfortunately).  Folks who promise they have experience who we later found had absolutely none.  If you know anyone able and willing to be in my home helping with us so we can work and raise our own kids please let me know. 

3. MUSIC

The one thing my dad loves more than anything is music.  Aside from the love he has for his family his life's work and sincere passion has always been music.  My dad produced and engineered music in his garage turned studio when we were young and was a songwriter, singer, piano player, guitar player and generally speaking an all around music man. After moving to Nashville in the late nineties he was able to work in the studio full time at Word Entertainment, a former Christian label here in town.  He has since lost his ability to physically play but there is a magical hope in this.

"Musical memories are often preserved in Alzheimer's disease because key brain areas linked to musical memory are relatively undamaged by the disease."

We know this to be true. My dad cannot tell me my name to my face when asked but when driving in the car last week Led Zeppelin came on and he immediately broke in with the correct key, lyric and timing. It's a magical backdoor. 

In a city of music and with so many precious musicians out of work.....if you or someone you know enjoys singing or playing for the sake of singing or playing-would you come sing for him in the evening times? 

Help us endure his sundowns.

"The term "sundowning" refers to a state of confusion occurring in the late afternoon and spanning into the night. Sundowning can cause a variety of behaviors, such as confusion, anxiety, aggression or ignoring directions. Sundowning can also lead to pacing or wandering." 

When the sun starts to set-my daddy's brain and heart starts to spin out of control. I take him out into my backyard and sit on the deck and play him Bruce Hornsby, Sinatra, The Beatles, Elton John....and it sparks a connection. In those moments he "knows something by heart". He will start thanking me profusely just at the surge of joy. He is still completely broken but you can see that he "feels" things again.

If we set up a safe socially distant space for you in my backyard would you come play for him? We will feed you drinks, sweets, wine-whatever suits your fancy.  He can only give us about 45-60 minutes of attention but in those minutes of simple backyard chill time with music would be an incredible gift.  He may not be able to thank you in words but if you have a relationship with music you can imagine what it must give him.  I know Bellevue is far for some people and I completely understand but if you're ever in his neck of the woods we would be so grateful. 

If you have any place in your heart for this special man it would mean the whole
world to us. We will take anything- simple prayers matter too-to get through this


-with love
daddy’s pack