We have a special needs family that caters to my 85-year-old Mom with PTSD, dementia, and anxiety. We also have a son who was recently diagnosed with type 1 diabetes. Let’s say, every day is a toss-up!
01/11/2021
Yesterday one of the caregivers was overwhelmed by the intensity of my mom’s behavior. She can be very intense. She has been increasingly agitated due to a change in medication that was not our choice. A few months ago her PCP retired and the clinic was sold to another local business that does not have a good reputation with us. They are the same facility that caused my son to end up needing emergency care due to his failure to read and interpret lab results accurately.
Mom has now had about 5 sleepless nights in the last month. When she doesn’t sleep then that means Ricardo or I am not getting sleep either. As I was leaving home today, I apologized to the caregiver for how much stress my mom is under. When she’s like this it makes it hard on anyone caring for her. If we can’t get the right help soon, then we will not be able to sustain this. We already know that care facilities are not capable of providing care for someone like her. This is the reason that I brought her back home.
Many elderly people are on 20+ different medications. My mom was only on 2 prior to this recent fiasco. Now she is on a 2nd antidepressant which is not doing anything to help. All the while, they are tapering her off the medications that were helping her have a nice quality of life. I’m a healthcare professional and always amazed when healthcare professionals don’t listen to patients and what their families are saying works for them.
Here’s another photo to lighten up the day! This is a picture of her in the kitchen taken in Seaside, OR on one of her last times on vacation when she was still able to stand, about 6 years ago.
Some of her favorite things to do back then include reading, doing word puzzles, jumping on the mini-trampoline, going on long river walks, playing with my son, playing table games, juggling, being with family, and going on vacation with us. From that list, the only thing she can still do is go on vacation with us!
When people get older and start losing function, it’s a lot to grieve. They need people to understand that grieving is a different experience for everyone. Love and patience can be the best medicine for them. Don’t try to fix them, just accept them while still maintaining healthy boundaries for yourself.
02/07/2022
We have been through the works in the last 6 weeks. After the medical professionals decided to change mom’s medications without any consideration to anything we told them works for her. We thought her downward spiral might be her approaching the end very soon.
She started losing massive motor control which included aphasia and dysphagia. She was demonstrating Broca’s Aphasia, which is losing control of communication skills due to the inability to coordinate speech to form words. Her dysphagia was making it difficult for her to chew and swallow causing her to aspirate (choke) on food and liquids. She was starting to lose interest in eating.
I’ll do my best to post the miracles despite the horrible medical mess-ups that so many caregivers confront. Speak up for your loved ones when they can’t do this themselves. Your opinion might matter one day when you get blessed to find even one person who gives a shit and decides that you know what you’re talking about.
About 4 years ago I had to teach my mom how to talk again. She went almost a year without talking because she was so pissed off that it left her in a devastating state of depression and angry about life events that she had no skills to process or cope with. My tiny family, which consists of my spouse Ricardo, son Ivan, and myself, stuck with her through the thick and thin of challenging life circumstances.
We woke her up from failure to thrive by loving her. She made a huge comeback and she started folding origami paper cranes. She folded so many that we started making ornaments with them. We gave them away as gifts and kept one for ourselves that still hangs in her bedroom today.
About 1 year later, she was retraumatized by the same people. This time it was so severe that she ended up in a nursing home. This change was devastating, got better, then got worse again since the staff changed and she ended at the doors of failure to thrive again due to neglect. For about 6 months I visited her daily to keep an eye on her, feed her, do her nails, shower her, bring her some food, manage her laundry, do some therapy, and of course, love on her!
By the time I was done with her, she was back in the game and doing so well that I couldn’t stand the thought of leaving her to live in that death trap. On February 20, 2019, we rescued her and brought her back home to live with us! Here we are again, teaching her how to eat and talk, writing on her board, getting her oriented back to life again.
We got super lucky when a home health nurse who couldn’t provide service for us was misrepresented when we told the agency our needs, which was not a service that they could provide. She was an angel that came in the time of need and immediately understood our desperation for needing to find a new primary care provider. Thank goodness, she led us to the new agency we are using now!
Fortunately, my mom is recovering beautifully from needless suffering. She’s back on the same medication protocol, which is only 2 medications total, that has and is working well for her. We are appreciating another day to witness how people can thrive when you just listen and observe. The interesting thing that happens when you do this is they will tell you what they need. What a concept!
03/22/2022
Wow! A lot has happened since the last update!
My son is growing in so many ways, but one thing he’s not growing out of is having one or both Ricardo and me around for supervision. He’s 11 years old and an emotionally powerful person. Today, he told me that he notices that any time he plays VR his blood sugar drops. I let him know that every time he plays basketball his blood sugar shoots up! We talked about the power of emotions and the effects that has on his pancreas.
Later in the day, I was going to put a tiny serving of Nutella on some crackers for my mom. When I opened the small jar that I just bought on Saturday, it was basically empty! I was mortified since I knew that it was my son who polished it off! I was mortified knowing what this could do to him with his type 1 diabetes! Ricardo had noticed that his blood sugar was out of control and didn’t know why. I on the other hand am always investigating the situation and happened to connect the dots between his blood sugar and the mysteriously missing Nutella!
I remember when my son was a baby. I remember feeling like I couldn’t relate to how parents often have no problem shipping their infants off to daycare after just a few weeks to months after birth. I didn’t have the heart to do this since I could see how vulnerable this little being was and how much attention babies need. We structure our whole lives around bringing this little guy into a world that had both his parents raising him. Kids need two parents and often a whole tribe to have all their emotional needs met.
The last week has been very much an eye-opening reminder about how much emotional support my aging mom needs in her transition in life. Growing old for her is going back to the place that she came from as an infant. She literally is curling up and getting stuck in the fetal position. Her anxiety continues to be crippling and the last disaster she went with the doctor’s mismatching her medications took an irreversible toll on her. We advocate very strongly for her, but even still, the power to write prescription medications is out of hands. The only thing we can do is forgive ignorant people for not knowing what they’re doing and the harm they’ve caused, and be grateful that we found a new amazing PCP from Crowne Health.
4/28/2022
A lot has happened since my last update. My mom has had many ups and downs. I say she has 9 lives since I’m always amazed at her will to make a comeback after trying times.
We have decided to admit her to palliative care. The struggle has been long and hard to get her to a place where she can be more comfortable with her anxiety since she is not able to self-regulate this. Sadly to say, my mom is one of the people who have her FLIGHT, FIGHT, FREEZE switch stuck in the ON position most of the time. I have learned a lot from working with her and other trauma survivors.
Thank goodness we have solid strategies to help her get good sleep, we know how to make exactly the kinds of foods she loves to eat, and the rest is just spending a lot of time loving on her. While this all sounds easy, it’s been incredibly challenging to get to this place where we have a team of people who support us physically, mentally, and emotionally.
I was just talking to our social worker and informing him about our neurodivergent family of four, which includes my mom plus the cat. On a daily basis, we are challenged interfacing a world that is overstimulating in different ways for each of us and how that sometimes makes for a complicated day of just doing normal everyday things. Understanding all the nuances of each person, what preferences, and what requirements each of us has to avoid getting overwhelmed is tricky. Let’s not talk about how that would look if all of us get triggered at the same time!!
I have been thinking a lot about how to further global awareness of neurodivergence. Without support and understanding, people like us won’t survive on the future planet. The cost of not understanding people whose brains are wired differently will result in increased rates of drug abuse, physical violence, unusual health conditions (like autoimmune diseases), and suicide. Fostering awareness of neurodivergence will open more doors for an innovative evolution of our human species.
So back to what matters, my family. I am glad that I have learned so much about myself and why I feel different, at times awkward, and learned to be ok with not fitting in. I’m excited that the world is leveling up in the direction of understanding people like us. I am glad that I understand what my great teacher (mom) is here to teach me so that I can help others like us live and have fun with this unnormal life!
When my mom is gone, may this page live on as a Legacy of her message to me and the world. May it create a springboard for me to develop more resources toward a stronger world!
6/18/2022
GETTING THE CARE YOU WANT AND DESERVE
Ricardo and I have been caregivers for 12 years. It’s been a long journey that will go way beyond my mom and son’s eventual coming of age.
Getting the care you want and deserve is not as easy as one thinks.
Generally, people go to the doctor to report their symptoms, get a prescription for a medication, a test, or a referral to a specialist and go through the obvious steps.
What if you’re someone that has never really gotten help by taking these steps since you don’t fit into this algorithm of healthcare? Nonetheless, what you are going through is absolutely real and so is your pain and anguish.
The conventional healthcare system is so general to a point, that unless you have something life-threatening going on, you will be ignored time and time again. Don’t lose hope. What you’re going through is very real. How you feel is the same reason that victims of crime often do not speak up. They have already experienced being blown off by the so-called professionals and people who are supposedly friends and family.
We have worked side by side with these people that blow you off. Oftentimes, these people are your employers, business partners, primary care providers, your kid’s teachers, spouses, friends, and other family members.
They are people that you thought you could trust, but in reality, they have been your enemies. They never really believed anything you said, stood for, or are representing.
I will say goodbye for now and thank those obvious people for believing in us and our family situation.
Your love and unrelenting support, which can not possibly be conveyed in this post, have meant more to us than you know!
Love the ones who are in our inner circle of trust.💜
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09/04/2022
I have taken a long pause from updating here. I needed to collect my thoughts and create some space with the world and my mom passing on May 12, 2022. It was not expected and we have been recovering from shock due to the event.
My mom spent nearly 7 years physically and mentally disabled from traumatic family events. That was also 7 long years that we spent dealing with a lot of different healthcare providers including caregivers both in an out of our home.
In her last episode of having caregivers, which lasted 3 years, there was one caregiver who became very attached to us as a family. Fortunately, this relationship ended after my mom was retraumatized by this person. When we released this person from duty, there was retaliation. This rage was targeted directly at us and a few days later my mom passed away.
I am grateful that I can see God’s hands in all the events, we were sheltered with love, protection, and prayers from family, friends, and loved ones. My mom passed in the arms of Ricardo and me. She was not in pain or distress.
The choices that I’ve made to leave a very high-stress medical career and start 2 businesses have allowed me to be at home to care for my family. This was absolutely the right choice. My mom got what she wanted and that was to not die alone.
I have been living on faith and taking action to be a part of creating a different world. One that makes the human connection the priority. My next Move That Matters with #Helpinghands is to invite those who want to help people who don’t have the financial means to access the healthcare that they need and deserve.
I will donate my time to families who are in need of pain management services that can’t afford the cost of these services that insurance does not cover. I have seen how the right kind of care can totally change the life of one person and in turn impact a whole family, workplace, and community! If you are interested in being a part of this kind of change, we would love to have your support!!
This tribute was made to honor the life my mom lived, the love that she gave, and her love that will continue to live on through our #Helpinghands.
WATCH NOW! https://youtu.be/lgpzePtLzBU
Emiko Shepherd & Ricardo Saldia