Tag: caregiving

Posted on in health, mitochondrial disease, special needs, vision impairment

The Newest Normal

It has been more than a year since Rhia began losing weight, and we still don’t know why. What triggered weight loss, increased ataxia, decreased stamina, and vision loss? It began so slowly that I didn’t notice how thin she was or that her ataxia had worsened. It was like watching my hair turn gray; one day I realized I had more gray in my hair than I thought. When did the gray strands outnumber the brown? When did Rhia become so thin? Blood tests and an MRI hunted for answers but as usual nothing was found. Rhia is still the same medical mystery as she has always been.

One year later, Rhia has stabilized. She’s still too thin, but she is staying above 90 pounds. Her ataxia is so bad she rips the pages of her books when she turns them and she often pokes herself in the eye with a crayon when she colors. The only thing keeping her walking is will power. But since the beginning of the Summer she hasn’t gotten any worse. Usually she declines a little for a few months and then we all breath a sigh of relief and figure out how to manage her new normal. This decline lasted longer than ever before. Is that the new normal? Instead of a sudden crash lasting a few months her physical decline will be like a long, slow glide into looming rocks?

Welcome to the newest normal. Rhia has finally stabilized and now we both figure out how to manage the newest symptoms. She needs Physical Therapy to rebuild muscle so she can keep walking. She needs Occupational Therapy to help her learn to turn a page in a book without tearing it. She needs Speech Therapy to help her clearly speak so others can understand what she’s saying and she needs to relearn to chew her food so she doesn’t choke. She needs knee surgery to stop her chronic pain.

I need her to wear safety glasses to stop her from scratching her own eyes with color crayons. I also need her to tolerate a gait belt so I can safely transfer her from sitting to standing as well as getting in and out of the car. No matter how much I beg, or command, she won’t do either of these.

Today, this is the newest normal. Rhia is cheerful, determined, funny, and more stubborn than I, which I know is hard to believe. Her entire body trembles from ataxia now, not just her legs. Her color and contrast vision are much worse; she can’t tell the difference between orange and yellow anymore. Today she weighs 92 pounds. She’s trying to figure out how to keep doing what she likes to do and I’m trying to figure out how to help her do that.

The one thing that hasn’t changed is her smile.

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 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 author, books, caregiving, disabilities, family, happiness, health, strength

How To Work Self-Care Into Your Family Caregiving Plan – Guest post by author June Duncan

The following is written by June Duncan, author of The Complete Guide to Caregiving: A Daily Companion for New Senior Caregivers, coming in Winter 2018. Click the link for more information. 

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How to Work Self-Care Into Your Family Caregiving Plan

When your life revolves around caring for another person, it’s hard to make time for yourself. But if you don’t, you could end up burning out, leaving you unable to continue caring for your loved one.

Caregiver burnout is a serious problem for people caring for elderly family members. It’s known to contribute to depression, concentration problems, and substance abuse, and even leads some caregivers to mistreat or neglect their family member in need. The cause? Chronic stress from neglecting your own needs as you care for another’s. For that reason and more, it’s important that family caregivers find ways to fit self-care into their schedule.

First, healthy meals should be part of any caregiver’s day. Preparing nutrient-dense meals is not only good for the senior in your care, it also ensures you get the nutrition you need to keep illness at bay. Develop a list of healthy meals you can prepare in 30 minutes or less to take the guesswork out of mealtime. When finding time to grocery shop for ingredients is a challenge, grocery delivery services or food subscription boxes can simplify the process.

Likewise, committing at least 30 minutes per day to moderate exercise like walking or gardening helps caregivers meet the activity levels recommended for physical health. If you exercise alongside your family member, it helps their health as well and provides an opportunity to bond — plus, finding time to exercise is easier when you can bring your charge along. For more vigorous exercise, consider signing up for a fitness class at a center that also offers classes for seniors so you both can benefit.

To round out the physical health side of things, ensure you get plenty of sleep each night. Not only does poor or insufficient sleep limit your ability to cope with stress and control your emotions, according to the National Heart, Lung, and Blood Institute it could also contribute to depression, increase the risk of chronic health problems, and lead to dangerous mistakes like giving the wrong dose of a medication.

Of course, your needs go beyond the physical. It’s also important to take care of your mental health so you have the capacity to treat your family member with patience and kindness rather than reaching for alcohol or drugs to alleviate stressors. This may seem simple enough at the beginning, but stay true to yourself even when things get really tough.

Chronic stress, like the tension many family caregivers experience, can lead to serious mental health problems that include depression, anxiety, addiction, and even cognitive impairment later in life. And although many people don’t realize it, stress is also intimately connected to physical health: According to the American Psychological Association, chronic stress can cause muscle pain and digestive problems, suppress the immune system, raise blood pressure, and contribute to serious illnesses like heart disease and obesity. Since stress can affect every aspect of your health, it’s clear that keeping it under control needs to be a priority.

To manage stress while providing caregiving, identify stress relief techniques you can apply throughout the day, like flowing through a meditative yoga sequence, practicing 4-7-8 breathing, calling a supportive friend, taking a power nap, or visualizing a relaxing scene. Each of these stress-reduction strategies can be done in 10 minutes or less and requires nothing more than a quiet space, so you can employ them at a moment’s notice when you need relief.

It’s not unusual for family caregivers to feel guilty about taking time away from their charge, but self-care is an essential component of a sustainable caregiving plan. When you take care of your own physical and mental health first, you’re better equipped to handle the challenges of caregiving with dedication and grace.

Image via Unsplash

Posted on in caregiving, disabilities, life, mitochondrial disease, parenting, special needs

5 years and counting

Rhia almost died five years ago on Easter. After a week in the hospital she recovered from what the doctors called metabolic distress. She left weak, but alive. And she had an actual diagnosis for the first time: mitochondrial disease. The doctor didn’t know which type of mito she had, but all the symptoms pointed to some kind of illness that starved her cells of fuel. Slowly, over many years, her cells would starve to death and she herself would die.

They gave her five more years.

That was five years ago.

I spent five years preparing myself for her inevitable death.  Five more Christmas. Five more trips to Disneyland. Five more visits to New Orleans to see family. And then one day she would stop breathing, and my lovely girl would be gone.

But she’s still here, happy and thriving and very much alive. Her ataxia is worse and so is her vision. She can barely walk, even with her walker. Managing her fatigue is top priority. And she’s lost ground cognitively. But despite all predictions, she is still here. She is a friendly, stubborn, kind-hearted, and curious young woman who deals every day with her disability. It frustrates her sometimes but she never gives up. Every time she walks into the doctor’s office on her wobbly legs, it is another victory.

I was ready to say goodbye. I wasn’t ready to take care of an adult with severe disabilities. Soon she will transition into an adult day program when she ages out of the school system at age 22. That is next month!

22. No one believed she would see age 22. Not even me.

On Tuesday we go back to Stanford for her annual check-up with the geneticist and neurologist, They measure her body and track her decline; there is always a decline. And they always smile when they see her. I see the unspoken “how are you still here?” Rhia is impressive, a mystery that has puzzled her geneticist for 10 years. First he couldn’t figure out what was causing her symptoms, now he can’t figure out how she’s still alive. But he seems thrilled to see she still is.

I know I will outlive my child, but no one can tell me by how long. She could collapse tomorrow, or next month. Every time she gets sick I feel the tight panic in my chest. Is this the illness that finally saps her strength? She recovers and my fear subsides. Until she falls. Will this injury be the one that stops her from walking? She gets back up. She keeps walking. She keeps smiling. There is nothing I can do but watch and enjoy every moment I have with her.

Not to say she’s always a joy to be with. She can be impossible! Stubborn and quick to frustrate, she can yell, hit, kick, and throw things. But she is just as quick to apologize and make amends. She’ll pick you a flower or draw you a picture. When you’re sad, she’s the first with a hug. She tells the most ridiculous, surreal jokes and laughs at her own wit. She sings in the car and the bathtub. And she always makes you feel like you are in the presence of a miracle.

I know we’ll say goodbye one day. But right now, I’m going to watch Snow White for the hundredth time with my fabulous daughter.

 

Posted on in caregiving, disabilities, family, life, parenting, special needs

Wanted: The perfect program for a highly social, deaf-blind, medically fragile, young woman.

Last week, I attended my daughter’s very last IEP meeting. Rhia turns 22 in May, which means she will no longer qualify for school based services. Instead, she will be a full fledged, 100% adult, with all the challenges and opportunities that provides. I sat beside her at the the meeting, surrounded by people who have been a part of her life since elementary school. Her current teacher used to be her aid in the 4th grade. Now he led the meeting that would transition her into adulthood.

Fighting back tears, I stated my concerns. Who will be her Sign Language interpreter? How will she continue to learn ASL? Which program will provide the most flexibility while still providing social opportunity so she can make friends? How will we fight the isolation that comes when a person is deaf-blind and uses a wheelchair to travel?

No one knew the answers. Everyone was worried and everyone tried hard to come up with solutions. But what I really wanted was someone to take charge with their magic wand and create the perfect program for my daughter. Unfortunately, no one had a wand.

It’s not that I didn’t know this day would come; her IEP team and I have been discussing it since the 8th grade. Transition is a big deal so it takes years to plan. The problem is that my daughter is medically fragile and has serious communication challenges. We live in a tiny town with limited opportunities. We really need to move to Berkeley or Santa Rosa, but who can afford the rent? So here we are, Smallville California, hoping the perfect program for my Disney loving, shy, cheerful daughter will appear.

Rhia keeps asking me what will happen when school ends. I tell her she’ll go into a different program for grown-ups. She’ll make new friends and maybe take classes at college again. She scrunches up her brows and looks at me sideways, not sure if I’m telling the truth. But I am; I’m telling her what I hope will happen. When I ask her what she wants she says she doesn’t know, but she’d like to move to “LA” so we can go to Disneyland everyday. Darling, if I could, I would, but I can only afford to live in a tiny town in NorCal where the adult programs are geared toward work and very few people know ASL.

I really need Godmother’s wand!

Posted on in caregiving, health, life

Permission to Rest More

I slept this week. Every chance I got, I curled up under my warm blankets in my comfortable, old fashioned iron bed and willed myself to dream. Dishes piled up, laundry didn’t get done, and writing ceased. Instead, I snored.

After weeks of illness, the holidays, my daughter out of school and interacting with lots of people, my cold turned into a sinus infection. My doctor prescribed antibiotics and I reluctantly filled the prescription. But rather than taking one when I got home, I set the bottle of pills on my bedside table and took a nap. When I woke up, I asked, “What if I gave myself an entire week to sleep as much as I want? Will I get better on my own?” Deciding to find out, I set the meds aside. For one full week, I would drink tea and sleep.

Instantly I felt guilty. Shouldn’t I just take the meds and get better? I had a thousand things to do and a book to write and Christmas decorations all over my house. If I took antibiotics I’d probably be better in two days instead of a week. Giving a week to rest is an indulgence I couldn’t afford.

Or could I? My daughter went back to school, and although it’s true I work hard as her caregiver, there were several hours each day I could spend in bed. Besides, my body ached with fatigue and my lungs burned from coughing. My head pounded. Whether I wanted to accept it or not, I was sick and needed rest. Why not rest fully?

Grabbing my iPad, I climbed back into bed and watched Poirot Murder Mysteries on Netflix.

A funny thing happened over five days. Not only did my cough slowly improve and the pressure in my head subside, but my stress diminished. My cuticles healed because I wasn’t biting them so much. My eyes weren’t so dry from staring at a computer screen all day. When the phone rang, I didn’t jump and when my daughter needed me I had more patience. Not only did my body need rest to recover from illness, my body seemed to need rest to recover from 2015.

My head feels better now, but I might have an infection. I’ll give it time. From what I’ve read, antibiotics only cure sinus infections about half the time, so resting may be just as effective. But rather than killing off all the bacteria in my body and starting over, I gave my body a chance to kill bad bugs on its own. We’ll see if I still need antibiotics.

Rest is a luxury we can all use. I know I’m lucky to have the time; not everyone can ignore their work for a week. Realizing this, I don’t take rest for granted. It is a gift my daughter has given me. It’s challenging caring for a person with disabilities, but there are hidden gems in the work.

Next week I’ll jump back into my regular schedule of teaching, writing, running my press and managing the chaos. I’ll battle Social Security to make sure my girl has everything she needs. But right now, I’m going back to bed with a good book. Ahhhhh, heaven.

Posted on in caregiving, family, health, life, Uncategorized

Is there a difference between gratitude and happiness?

This summer, I began a 150 day happiness challenge on Facebook. Every day I would post something that made me happy. It felt important I do this because I was overwhelmed with fear and anger from my husband’s cancer. Suddenly, I was the caregiver for two medically fragile people, my husband and my daughter, and the emotional toll made getting out of bed difficult. So I started looking for things to make me happy.

Quickly, the exercise felt phony. Very little made me happy. Writing about the joy I found in my morning coffee was silly, and how many times could I write about my garden? Happiness? What was that? I was happy just to get through the day.

Then I realized that I was actually writing down things I was grateful for. Having that morning cup of coffee helped ease me out of bed, and I was grateful for that. Watching my garden grow filled me with gratitude because I could feed my family while supporting wild bees. Gratitude was the best I could do. Happiness was like chasing a mirage.

What is gratitude? To me, it is an awareness of the gifts I have in my life. The simple things, like a warm bed, health insurance and the internet. I am grateful my husband’s cancer seems to be gone and I am grateful my daughter is thriving in her new school. I am grateful for her teachers. Grateful my car is running and I can afford new tires for winter. These things don’t make me happy; they make me grateful for my life.

As the weeks went by and I forced myself to post a gratitude, an interesting shift in my awareness occurred. The more I focused on gratitude, the more I felt happiness. Where did this happiness come from? Circumstances hadn’t changed. My husband still struggled to recover and my daughter still had bad days, but she also had good ones. There were days I wanted to cry from the weight of the emotional load I constantly carried, but on that same day I’d smile watching the dog chase leaves across the back yard.

I am not in denial; things are bad. Frightening. Cancer lurks and my daughter could decline any time. Money is tight and I still don’t have job. The future is one big scary unknown and the odds aren’t in our favor.

In searching for any small, random thing I felt grateful for, I uncovered a rich source of joy. Happiness fluctuates. But gratitude is constant. WhenI feel happiness has vanished and I’m left alone fighting my battles, gratitude holds me up. I am grateful for my strong, weary body. I am grateful for love. I am grateful it rained today.

Or is there really any difference between gratitude and happiness? Can you feel one without the other?

Posted on in caregiving, disabilities, opinion

People with Disabilities vs. Caregivers. No one wins.

IHSS workers protesting
image from http://www.cuhw.org/2013/12/first-look-shasta-ihss-contract/

On August 21, 2015 a Federal Appeals Court reversed a Lower Court ruling regarding overtime pay for Home Health Care Workers. In the ruling, the court ended the exemption  of home care workers from overtime pay. The long term caregivers union is rejoicing. Advocates for people with disabilities are angry. The fight isn’t over.

People with disabilities are concerned that they will lose caregiver hours because agencies will stop paying the full hours people need to stay in their homes. Private pay employers won’t be able to afford their workers. Caregivers are angry because they are paid low wages but must work more than 8 hours a day. Caregivers are fighting for a livable wage and people with disabilities are fighting to live.

When people with disabilities are pitted against the people who care for them, who wins?

This battle reflects a deeper problem. People with disabilities are not considered viable members of society and therefor have no value.  The people who care for them are primarily people of color and women, groups traditionally considered low status. The system of caring for people with disabilities is structured around “cost savings.” As long as it is shown that keeping people in their homes saves society money, then doing so is considered important. But what cost do you place on respect and dignity?

Caregivers work as nurses, housekeepers, drivers, secretaries and cooks. They often bathe, dress, and help toilet severely disabled people and are paid minimum wage. Despite the long hours, most caregivers are dedicated to their clients and feel that they are making a difference in the world.

People with disabilities rely on their caregivers to not only support their physical needs, but to also help them engage with the world and enjoy their lives. The threat that they may lose their supports if a pay increase is mandated is real. State budgets are strapped and agencies run with minimal staff. Where will the money come from? And for those who have  to pay out of pocket for caregivers, will the changes force them to go into an institution simply because their insurance will pay for it?

I am my daughter’s caregiver. I also rely on other caregivers to help me keep my daughter in our home. I gladly work far more hours than I am paid, and I know other caregivers who do the same. Many of these workers are not family members, but they know if they didn’t donate hours their clients would suffer.

It’s time for caregivers and people with disabilities to stop fighting each other. People need to stay in their homes and workers need a livable wage. Rather than suing each other, it is time for both groups to unite and demand increased funding for programs that support the disabled. We need to examine our society and ask why we are so willing to throw people away simply because they can’t care for themselves.

Posted on in caregiving, writing

Reclaiming the joy of writing while being a caregiver.

Because of my husband’s cancer fight, my writing productivity has dropped. When I try working on my book my brain freezes and it takes hours to write a page. Before, the words flew through my fingers, but now they drip like melting snow on a roof.

I’ve decided that’s okay.

Somewhere along this road of creating a publishing company and editing business I lost the joy of writing. My work had to be useful, meaningful… productive. I didn’t allow myself the luxury of sipping strong coffee in a cafe while writing bad poetry no one would read.  “What are you writing?” sounded like a challenge; I’d better have an answer and several good pages to show.

I’m still working. Currently I’m writing a middle grade chapter book and a rough draft for my memoir. I’m also researching drag queen culture for a new play. Writing is in my blood. But instead of worrying about word counts and productivity, I’m relaxing into the process of writing. The outcome isn’t important right now.

My energy is needed to help my husband fight cancer and my child transition into adulthood. Therefore, I’m reclaiming the joy of writing, which includes several pages of awful poetry.