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…

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.

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.

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?

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.

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

A hospital connoisseur.

My father needed a quadruple bypass this summer, so I flew to Oregon to be with him through the procedure and during his stay at the hospital. He was understandably terrified, and I admit so was I. But the procedure went well, his heart is strong, and he went home after only a few days in hospital. Now it will simply take time for his sternum and the incisions to heal. So far so good.

While I was with him at the Oregon Health and Sciences University Hospital (OHSU) I spent a lot of time exploring the sprawling campus. Seriously, that place is huge! And confusing. Floor 9 is the main floor while my father’s room was on floor 17 of an entirely different tower from the main hospital. It’s built on the side of a hill with incredible views of the city of Portland and the Willamette river. From my dad’s room we sat and watched the sunlight change the colors of snowy Mt. Hood. From a terrace below his room, I could see Mt. St. Helen.  I took a hanging trolly down to the water’s edge and then walked to the City center, about two miles. If you have to have major surgery, have it done at OHSU.

I’ve spent way too much time in hospitals in the last ten years, which makes me somewhat of a hospital connoisseur. My daughter has twice been a guest of Lucille Packard/Stanford Medical Hospital. My husband was hospitalized twice at University of California San Francisco (UCSF) for cancer treatment. And recently my daughter was a guest at our local, rural hospital due to pneumonia. I have tasted the food, walked the halls, interacted with staff and doctors, watched the nurses closely, taken in the views, strolled the neighborhood, and fought with insurance companies at some of the best hospitals on the West Coast. And OHSU is the absolute best.

It comes down to staff and communication. OHSU beats all the other hospitals we’ve dealt with in staffing levels and nursing care. Every single nurse was positive, helpful and considerate. Everyone worked hard to maintain a patient’s dignity and to communicate with them to alleviate fears. And if a nurse needed information from the doctor, she got it quickly. No paging the doctor for hours like at UCSF. Plus, the rooms were large and comfy, super clean, and had great views.

The downside to being a hospital connoisseur is the PTSD that hit me every few hours. While sitting beside my father I would suddenly feel the same panic I did when my daughter was hospitalized for metabolic failure. The past and the present would blur until my body didn’t know the difference. My father was resting comfortably, but my heart would pound the same way it had when my husband was groaning in agony. The only cure was walking. I’d pace up and down the halls, outside on the terraces, up and down stairs, walking to town and back… just walking until the panic would subside I could feel the present pushing away the past.

This is old fear. Don’t let it blend in with the new fear. Will my father survive his surgery? Will he heal? Will my husband’s cancer come back? Will my daughter crash again? 

shhhhhh… let it go. Keep walking. Keep breathing.

Now that my father’s surgery is over and he is well, I have one more request from the universe: no more trips to the hospital this year!  I don’t need to explore new hospitals, or even old ones for that matter. Please keep my loved ones healthy and safe. Keep me healthy and safe. I may be a hospital “pro” now, but it doesn’t mean I want this to become a habit.