Category: caregiving

Posted on in caregiving, disabilities, health, opinion, teaching

You have the Power to Save Lives

You have the power to stop Covid19 and save lives simply by following the guidelines of health professionals. That’s it.

No one is asking you to stay home to take away your liberties. No one is asking you to take precautions to inconvenience you. And absolutely no one wants to shut down the economy and destroy people’s lives and futures because of politics. No one.

You are being asked to shelter in place to protect and care for those most vulnerable, people like my daughter, my father, my sister-in-law, and all the medically fragile kids I work with. And by doing so you also protect yourself and the people in your family. Covid19 attacks young and old, healthy and frail, which is why everyone needs to be vigilant.

Please. I am begging you.

You are a part of a community. What you do impacts your family, friends, co-workers and neighbors. Being an American doesn’t make you invincible or give you the right to put everyone else at risk. Just like there is a difference between Freedom of Speech and Hate Speech, there is a difference between Personal Liberty and Negligence.

Millions of people are suffering right now from fear, illness, and poverty. We all want to get back to work, including me. I’m one of the lucky ones who can work from home, but as a teacher, I would much rather be with my students at school where I can help them cope with the impact of this pandemic. If we open our doors and all return to work and school too quickly, more people will die. We must wait. And wait…

I don’t know what the future will bring for myself, my students, or my daughter. All I know is right now, today, I can take care of my child, myself and my community by staying home, washing my hands, wearing a mask and gloves when I must go to the store and waiting. That is all any of us can do.

Posted on in caregiving, disabilities, health, life, mitochondrial disease, special needs, strength

Survival Skills from Rhia

Rhia and I are sitting together watching Frozen in the middle of a rainy Sunday afternoon. We’re safe and healthy, blessed with a warm house to shelter in and plenty of food. During this time of so much sickness, what more do we really need? The interesting thing is that not much has changed in our daily lives. Before Covid19, Rhia and I lived a quiet life. We rarely went out to eat or visit friends. Our life pretty much revolved around trips to the library and to Starbucks for a hot chocolate. Occasionally people came over, but that too was rare. About once a month I had caregiving coverage so I could go out with friends. So our ordinary life is about the same, except for the library being closed.

Isolation is nothing new to us. Neither is fear. Rhia and I have lived with the uncertainty of an undiagnosed disease since she was born. Every time Rhia gets a cold or a high fever I wonder if this will be the one that puts her back in the hospital. She almost died once after a flu and then a few years later she was hospitalized with pneumonia. The slow decline of her physical health coupled with the lack of a diagnosis means we have no idea how long she will live. One more year? 5? 10? Her doctor’s thought she’d never reach age 20 but she’s almost 25. Every prediction has been wrong. Living with a see-saw of hope and fear makes us prepared for the uncertainty of this pandemic.

This isn’t some kind of “welcome to my world” post. Not at all! I am heartbroken that millions of people in the world are facing illness and death and the constant uncertainty about tomorrow. I know what it’s like to be broke and unable to work because you have to care for loved ones, and I wish no one had to deal with that. I am grieving for everyone and praying for a miracle, just like everyone else.

But what I’ve realized during this Shelter In Place is that Rhia has taught me incredible skills about survival. She has taught me how to live right now, enjoy all of the small moments of life, and feel gratitude. She has taught me it is okay to feel afraid, sad, or angry, and that you should give yourself time to grieve when you need to. She’s taught me how to get up in the morning when I really didn’t want to. She taught me how to walk with fear and not let it overpower me.

I’ve also learned very practical skills, like stock up on essentials before you need them. I never knew when Rhia might get sick or just too tired to go to the store, so I always have supplies (including TP) to get us through a couple of weeks. A few times I’ve needed something urgently so I called a friend or Instacart. When we first moved here I set up our Earthquake kit, which means I already have plenty of water and batteries. I always fill up the gas at a half tank and carry tools to repair her wheelchair everywhere we go. I also have managed to scrimp and save a couple of months of survival money. When you live with constant uncertainty you learn to be ready.

There have been times when I’ve resented Rhia’s disability, especially lately. I long for my own life, one that doesn’t include constant interruptions of sleep. I want to travel, but who will care for Rhia? I resent her dads who get to live their own lives and friends who go to all those places I long to see. But right now, I feel blessed. I am scared and tired and stressed out, but blessed. Rhia and I are safe and we have everything we need to get through the pandemic. We are both healthy and I pray we stay that way. Travel and going out aren’t important. What matters is love and caring for each other. I will care for Rhia for as long as she needs me, and she cares for me in a thousand ways that it took a pandemic for me to see.

When the pandemic ends, and it will, I won’t forget what I have learned. I pray none of us do.

Posted on in caregiving, day program, deaf, disabilities, life

Creating a Day Program From Scratch

It has been 6 months since I last wrote in this blog. During that time I’ve worked hard hunting for a program that fits Rhia’s needs. A program that includes activities, friends, art, excursions into the community and people who speak American Sign Language. She was placed on the waiting lists of two different programs that had everything except ASL and she tried out one, but it was a disaster. Then we found an incredible program in San Francisco for people who are Deaf and Developmentally Delayed. However, there was no transportation to get her there. We fought hard and finally the Regional Center agreed to provide it.

At last, she could go to ToolWorks!

Not so fast… Just like every program in California, ToolWorks is short staffed and struggling to meet the needs of the people already in their program. As soon as they had staff, Rhia could go!

We waited four months.

Finally, I’d had enough; we decided to hire people and create our own program. I put out an add for caregivers and quickly heard back from several interested people. Out of 10 applicants I interviewed 4. Actually I interviewed 2 because one no-showed and another cancelled. I hired one brilliant woman who met all the qualifications, including basic Sign Language, but she texted me an hour before her shift started, saying she wasn’t coming. After a good cry I ran the add again and thankfully hired a dependable, kind woman who actually shows up and takes great care of Rhia. Unfortunately she doesn’t know sign language.

Fine. We can work with this. With dependable staff Rhia can start finding things to do in the community. She loves the library, so they can go there. She also loves coming to my work, so I pay her to clean toys on Friday afternoons. She also likes being helpful, so she and her caregiver do the grocery shopping on Mondays. They also clean the kitchen every day. It’s a start, but far from what I dreamed for her, and I suspect far from all she’d like to do.

Rhia wants to be a teacher and work with young children. She loves creativity and making art. She enjoys going out to lunch and window shopping with friends. And she loves talking to people. Unfortunately, no one can really have a good chat with her except me.

Rhia doesn’t have close friends; she has caregivers.

She isn’t alone; so many disabled young adults are isolated from their peers, which is why a staffed Day Program can be great. How wonderful to spend the day with other people just like you, young adults who need help in the bathroom and use a wheelchair, have trouble communicating and can’t even feed themselves without help. Outside of a staffed program it’s just you and your caregiver.

The caregiver has worked a month, so they are still getting to know each other. They go on short outings and run errands for Mom. Rhia is slowly warming up to the caregiver as the caregiver learns to communicate with her. This gives me hope that in time they’ll be able to do more together and Rhia will make connections with others in her community. We’ll all figure out what activities are available and what she will enjoy. It just takes time.

Time… It’s been over a year and Rhia and I are still trying to find a way for her to have a life filled with fun and friends.

I’m so sorry, Rhia. I thought moving to San Mateo would make life easier for you.

Posted on in activism, caregiving, disabilities, life, opinion, politics, strength

People with Disabilities Fight Walls Every Day.

San Mateo County is wealthy, beautiful, and filled with opportunities. I believed that bringing Rhia to this prosperous city close to Stanford Medical Center (where she gets her medical care) would be wonderful. Rhia agreed. No more three-hour drives. No more being bored in a tiny town. No more hot summers. We packed our stuff and moved to a new home, filled with hope and excitement.

That was four months ago. We’re still waiting for the opportunities.

The first barrier to greater opportunity for Rhia came from Social Security. Despite the fact we pay three times the rent we did in Ukiah, Rhia’s disability check was reduced by $200.00. Why? Because the Federal Government counts any rent below market rate as income. Therefore, Rhia is getting support in the amount of $300.00. Never mind the fact that the market rate is over $1000 for a bedroom and Rhia only receives $900 to live on. It doesn’t matter that what she receives doesn’t come close to what she needs to survive. The Feds wouldn’t count reduced rent against her if she lived in subsidized housing. Oh, there’s a 5-year waiting list for subsidized housing? Well, it’s a good thing Rhia has somewhere to live! She could always be homeless and get the full amount needed to survive. It’s up to her.

Thanks a lot Feds. (insert middle finger here).

And then the Federal Government screwed Rhia again; there was a paperwork problem transferring her MediCare from one county to the new county. The process was already slowed down due to the holidays, and then to make it more fun the so-called President shut the government down. There is no one to answer the phone or anyone to figure out which black hole Rhia’s paperwork is trapped in. So we wait. She needs MediCare coverage to go to the doctor and she has to go to the doctor for a physical exam before she can start a day-program. But who cares? The President and Congress are bickering over a stupid wall! Too bad Rhia, you get to wait.

Day programs… there are some incredible programs for people with developmental disabilities. But getting into a day program isn’t easy. Waiting lists are months, even years long. I found a great program that is the perfect balance of center-based and employment. They provide art and vocational support and there are two other deaf people in the program. The director I spoke to thought maybe February, but now it looks like they won’t have an opening until Summer. Then a newer program opened and they’re happy to hold a spot for Rhia. Unfortunately, they are completely community-based, meaning there isn’t a center where Rhia can rest when she needs to. Plus, no one knows Sign Language. But the people are kind and Rhia is so bored and lonely we’re willing to give it a try.

Oh, wait, Rhia’s MediCare hasn’t transferred yet. Sorry kid, you have to wait until the Feds get their act together and reopen the government. Hope you like sitting around the house coloring all day. And it’s a good thing your mom is in Grad School so she can get a student loan to pay for childcare out of pocket.

I am broke, Rhia is lonely, and the government shutdown drags on. I’ve done everything I can, called every number, talked to every human I could reach, and have hit a massive bureaucratic brick wall.

A wall has been built, just not the one Trump wanted.

This is why people with disabilities tend to stay where they are, regardless of whether or not the services in their area are decent, or even accessible. This is why there are so many disabled people living on the street, or in sub-standard housing. Rhia has me to fight for her, but how many people have you seen who don’t have anyone? How many times can you be defeated before you just give up?

I will never give up on my daughter, but we sure could use a break.

Posted on in caregiving, disabilities, life, strength

Trust and a lot of Hard Work

I knew transferring Rhia’s services would be hard, but I had no idea just how close to impossible it would be. The net that was supposed to catch us after we jumped toward a better life is ripped, worn out, and stretched to the point of disintegrating.

San Mateo County services are excellent, but getting to them is another battle.

I haven’t had time to write. My days are filled with work, caregiving, unpacking, and school work. I get Rhia ready for her day, then work a full-time job, rush home to take care of Rhia again and try to get homework done. I’m failing braille simply because I don’t have enough time or mental focus to memorize all those little dots. But if I fail, I’ll get kicked out of school, which means I’ll lose my job, which means I lose our home, which means we can’t be in San Mateo County…

Stop! Don’t go there. Take it a day at a time… no, make that an hour at a time. And trust.

Trust what? Who? Myself? I actually thought I could move to the most expensive county in California and it would all just magically work out. I’m an idiot.

However… every cell in my bones tells me I’ve made the right decision. Rhia is happy here; she now lives in “San Francisco” where she is closer to her doctors and the weather is better. No more long drives. No more 100 degree days. For her, I’ll keep fighting.

The Regional Center is finally helping her access a day program. There are two good possibilities with great opportunities for Rhia. While we wait, I’ve hired a caregiver to help while I’m at work. Finding her was pure luck and I’m extremely grateful, but I hope the Regional Center hurries up because I’m running out of cash to pay for a caregiver.

…if I can’t pay the caregiver then I can’t work and if I can’t work I lose my job and then I lose our home and then we’ll have to leave San Mateo County…

Stop thinking like that! Deep breath… there’s nothing to do but keep going forward. Trust.

Trust that I made the right decision. Trust that this is the best place for both me and Rhia. Trust that people are kind and there is help out there. Trust that I am smart enough to pass braille. Trust that I have enough money saved to get us through this transition time. Trust that I am not really alone, even if I am a single mom again.

Posted on in caregiving, life, news, science

Caregiving with Mars

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(Image from EarthSky http://earthsky.org/astronomy-essentials/why-is-mars-sometimes-bright-and-sometimes-faint )

At 2 AM Rhia calls me again. “Mom! I’m tangled in my blankets!”

Dragging myself out of bed, I groan and yell, “Coming!” Why do I yell? She can’t hear me, she’s deaf! This will be the fourth trip I’ve made to her room since 10 PM and I’m exhausted. I shouldn’t have made my bed so comfy because it makes it even harder to leave it.

Glancing to the window, I see a brilliant red spot in the sky, visible within the gap between my blinds and the window frame. What the …? I lower the blinds a little to see more of the sky. The red glow is huge and I think it must be a helicopter. No, it’s not moving. The orange light shimmers like a star and there are lines of clear light emanating outward, reminding me of how the Christmas star looks in movies.

“Mom!” my daughter yells again.

I dash to her room, disentangle her legs from the bed sheets, fluff her pillow, get her a drink of water, and kiss her forehead as she murmurs “Thank you” and then drifts to sleep.  When I return to my bedroom, the orange light is still there.

It must be a planet, I think. It’s orange, so could be Mars, but I’ve never seen Mars that bright! Jupiter? Then I remember the astronomy app on my phone. After the app loads, I point my phone to the sky and the program centers on that glowing orange star.

Mars.

Mars in her most glorious brilliance as she moves closer to the Earth. The app reports that Mars is making it’s closest approach to Earth in fifteen years and the viewing will be excellent. In fact, Mars will move even closer later in the month.

I stand in the darkness of my room and stare at gleaming, golden-orange Mars and smile. It is so beautiful. If Rhia hadn’t dragged me out of bed again I would have missed it. Not that I’m thrilled to lose more sleep, but I’m grateful she woke me up at this particular moment. Leaving the blind lowered, I crawl back into bed where I discover I can still see Mars from my pillow. I drift back to sleep with that beautiful image filling my dreams.

Good night…

Posted on in ASL, caregiving, deaf, disabilities, Disney, life, parenting, special needs, strength

The Day Rhia Declared She Can’t be a Princess Anymore.

I found Rhia crying in her room.

“Sweetie,” I said, taking her in my arms. “What’s wrong?”

“I can’t be a princess anymore,” she said.

“Of course you’re a princess. Why do you think you’re not?”

“Because I can’t walk anymore and princesses don’t have ataxia! Have you ever seen a princess with ataxia? No!” She buried her face in my chest and cried harder.

I wanted to cry, too. Damnit, why does this have to be so hard for her? Why does she have to keep losing ground a little bit every day? If she has to be blind and deaf, why does she have to notice how all her friends are grown up and living there own lives while she gets weaker and has to stay home? What the hell do I say to her?

Rhia is passionate about Disney, especially the princesses. Cinderella is a personal friend and Rapunzel was at her recent birthday party. She wrote them all a letter and they wrote back. When we go to Disneyland, all she wants to do is talk to the princesses.

“They remember me!” she declares. And a few do. Over the years, we’ve met the same actresses who surprisingly remember Rhia out of the thousands of kids they see each day. There’s just something magical about Rhia, something that draws people to her. Plus, she has a gorgeous wheelchair with flower-print wheel rims. Rhia plays with her princess dolls every day and talks to them as if they are alive; her imaginary friends are her closest friends.

But on this day, those imaginary friends failed her.

“Listen to me,” I said, urging her to look up at me; she has to look at me to see me sign. “You are a princess now and always. Cinderella herself said you are a real princess and you have the certificate to prove it!”

“But that was before…”

“No. Once a princess, always a princess.”

“But I can’t walk any more.”

“So what? Cinderella didn’t say you were a princess because you can walk. She said you’re a princess because you’re kind and smart and funny. You care about people and are a good friend. You are helpful and creative. And you love to sing.”

Rhia had stopped crying and was listening, but still didn’t look convinced. “But I’ve never seen a princess with ataxia.”

“I know baby, and I’m sorry about that. I’m so sorry everything is really hard for you now. You are a princess because you are strong and try hard. All princesses are strong. You are a princess forever!” I hugged her tighter.

She sighed, turned away from me, and picked up her Ariel doll. I kissed her head and left her to think about what I had said. I overheard her ask her doll, “Do you think I’m a princess?”

I prayed somehow that doll said yes.

Posted on in books, caregiving, family, guests, writers

Know Your Options for Senior Care from Afar, a Guest Post by Claire Wentz

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Photo by Pixabay

Claire Wentz is the author of the upcoming book Caring From Afar: A Comprehensive Guide for Long Distance Senior Caregivers. For more information, go to her website.

When you have a senior parent who lives in another state, taking care of her can be especially difficult. But there are ways to stay in touch and keep a watchful eye over your elderly loved one with the help of technology.

According to Redfin, there are five main options for downsizing seniors: buying a smaller house or condo, renting a smaller home, moving in with a loved one, moving into a retirement community, and entering assisted living. If you’re considering putting your elderly parent or grandparent into more permanent care, here is a little more about those options:

Assisted living is an apartment-style facility in which seniors can live mostly independently but they might require help with daily living tasks, such as cooking, dressing themselves or taking their medication. They might also require help with transportation. Assisted living facilities provide these services.

Skilled nursing facilities are more like what traditionally were called nursing homes. They are for people who need around-the-clock care, and they may be temporary for rehabilitation or for long-term care.

Memory care can be in an assisted living facility or in a facility with more intensive nursing care. Memory care units are designed specifically for people with dementia, Alzheimer’s disease or other memory conditions.

If your loved one is aging in place, an amazing amount of new tech gadgets is likely to help her do so.

  1. Electronic pill dispensers — If your mom has trouble remembering which pills to take and when (it can be very confusing!), you can get one of these nifty devices. You can load the dispenser and program it so that she can know when to take her pills. Some can even record a voice telling her when it’s time to take her pills so that she hears it from someone she loves. Some dispensers even connect with her pharmacist who can monitor her medication use.
  2. Emergency call buttons — These have been around since the 1980s, but these days, they’re much more sophisticated. They can use gps systems so that your loved one can run her errands and visit her friends. If something happens, she can summon help without even knowing where she is. There are some systems that can tell when the user has fallen, so that if she’s unable to ask for help, she can still get it.
  3. Tablets for seniors — Your mom doesn’t even need to understand how a computer works. Simple-to-use systems can make it easy for her to video chat with you and your family, and it can monitor her movements and medical care.
  4. GPS-enabled shoes — This is a real gadget that can help you keep track of your loved one if she wanders off. Even if she just doesn’t get home when you think she should, you can check on her.
  5. Easy cell phones — Not all cell phones are “smart.” Some people just want a phone they can use easily. Some carriers have simple phones with large buttons and large screen fonts so that elderly users can access them.
  6. Health monitoring apps — Your mom can go to the doctor, and her doctor will put all of her information in an app so that she (or you) can access it from anywhere. This way you won’t be dependent on her memory of how the visit went, and you can communicate with her doctor any time by sending emails. The systems will alert the user when it’s time for vaccinations or blood work, and you can make sure she gets to her appointments.

We live in a great time to be a senior in the United States. The technology industry comes up with new and exciting options every day to make our lives easier. But most importantly — don’t forget to call your mother.

Posted on in caregiving, disabilities, mitochondrial disease, parenting

Caregiver or Mom?

Caregiver or mom? The two are blended into one role when our children are small. As they grow, we let go of small bits of caregiving. They learn to drink from a cup, use a spoon, pull off their own shirt and shoes and brush their own teeth. They become potty trained. They go to school and learn to write their own name. They get their own snack and in time learn to feed themselves. Perhaps they cook dinner for the whole family once a week. If they have smart parents, they learn to wash their own clothes. Slowly our children grow and become independent and eventually are able to live on their own. They don’t need us to be a caregiver, but they will always need us to be a mom.

This is what I’ve seen happen in other families. It isn’t what I’ve experienced.

My daughter will be 23 tomorrow but has less skills than she did when she was 10. Rather than gaining independence, she has become more dependent. Her illness has slowly taken away her motor skills and her hearing and now her vision is declining. Her cognitive abilities are reduced and something as simple as choosing which shirt to wear becomes an enormous task. So I help. I help her dress. Help her brush her teeth. Help her eat and bathe and use the toilet. We seem to be living in reverse.

The tricky part is balancing her need for a caregiver with my need to be mom. Her need for constant support with her desire for independence. My need to keep her safe with my hunger for freedom. We’re both trying to figure this out. When am I the caregiver? When I am mom? When do I make decisions that support her life and when do I make decisions to support my own?

A caregiver can be more methodical; I set my heart aside and take care of her daily needs. It doesn’t matter how frightened I am or tired, it only matters that she get enough nutrition and stay hydrated. I can manage doctor appointments and therapies and other caregivers that come to relieve me. Caregivers don’t need much sleep. Moms do.

This mom is frightened and angry and sad. This mom is sick and tired of the call in the night from a daughter who can’t get out of bed for a drink of water anymore. But this mom is also grateful that the call in the night still happens. My daughter, my beautiful, funny, kind-hearted daughter is turning 23 tomorrow after every doctor said she’d never see 20. We’re planning a party and celebrating the wonder that is Rhia. I am in awe of this child… this young woman… who disrupted my own life with her needs and curiosity. I am honored that of all the potential moms in the world, this spark of wonder chose me.

We still haven’t figured out the balance, and maybe we can’t. Balancing the heart with the mind and independence with dependence might be impossible. Sometimes Rhia is as sick of me as I am of the constant caregiving. She’d love to walk out the front door and find her own life with her own friends in another state! I’d love to help her pack.

But here we are, our lives entangled by Mitochondrial Disease. I’ll keep trying to learn when to be mom and when to step back and be the caregiver. A caregivers primary role is to support independence. Maybe that’s a mom’s role too?

Posted on in caregiving, friends, life, parenting

How can I help?

I am blessed with great friends who want to help. They send me notes on bad days and funny messages on Facebook. They text me a cyber hug. “How can I help?” they ask. They know how hard it can be to be a full time caregiver of an adult child. “Please, let me know what I can do.” But the answer isn’t that simple.

How can they help me with my daughter’s emotional distress as she loses her ability to walk?

How can they help me understand her on the days her speech is incomprehensible?

How can they help me interpret the world so she understands what is happening?

How can they help me when she has a meltdown in the grocery store and we have to leave?

How can they help me manage her day to maximize her energy and physical abilities, which change constantly?

How can they help me when she’s so lonely she cries because she misses her cousins?

How can they help me when I’m exhausted and in pain and need to rest my worn out body but she needs help in the middle of the night with a dizzy spell?

The problem isn’t the day to day stuff, like bills and errands. Sure, it would be great to have extra help putting gas in the car and cooking dinner. But those are the ordinary things that actually help me cope. Ordinary things, like laundry and gardening, cleaning the floor, organizing the pantry, and dusting help me stay grounded. The extraordinary things, like dealing with Social Security and Medi-Cal and my daughter’s inability to dress herself anymore, are the things that overwhelm me. But those are the things others can’t help me with.

So how do I answer “How can I help?” I do need help, but I don’t know how to specify  any more than I can figure out how to stop Rhia’s tremors. But if you have an idea, let me know.

Because right now, I’m emotionally overwhelmed supporting my daughter as she loses more physical and mental skills. I can’t figure out how to help myself.