Maybe now is the time to take a quick inventory: am I accepting, fighting, or ignoring changes in myself? Lately, it’s been a royal mix. I’m okay with the additional grey color in my multi-colored mane. The wrinkles…well, I’ve pretty much had dry skin all my life, so wrinkles have been a part of me. Okay, there are more and they are deeper, but there isn’t much I can to do about that. I’m not pleased with the overall shift in my weight, or to put it more bluntly, the sagging. But (pun intended!), everything else seems to work fine and I have accepted my overall appearance.

Me and one of my amazing mentors

So what do I do with this inventory? How do I move from acceptance to comfortable, and finally to at-home with how I look on the outside and feel on the inside? I lean on my mentors—the women who are older and that much wiser than me. These women have developed a stability and freedom that I yearn for. They are sassy, funny, smart, engaged, and real. My mentors have struggled and learned how to navigate life’s rough waters, emerging with a stronger sense of self after every storm.

If I can learn anything from them, then it is to move gracefully and purposefully ahead. Instead of yearning for the past, I aim to dance into my next stage. I’m sure I can do this…with a little help from my friends. Will you join me?

Over time, I noticed increasing pain and weakness in that ankle. Dancing wasn’t as fun anymore. Hiking and then simple walking became painful. I started favoring the edge of my right foot, instead of employing the heel-middle-toe flow of a normal gait.

I tried numerous therapies for my ankle, and eventually a physical therapist recommended an MRI to see just what was going on. The MRI showed that the cartilage between my subtalar joint and main heel bone had all but disappeared. No wonder I was in pain: it was literally a bone-on-bone situation under my foot! I finally had surgery at the end of January this year to insert two large screws that would help fuse the bones together. After eight weeks in a cast, flat on my back following surgery, I started the long process of re-learning how to walk.

Me and my crutch

I felt similar to my friend Jan, who told me years ago that she felt “old” because she had to use a cane to walk. My physical therapist took one look at my limping and my evident pain right after my cast came off and said, “Use one crutch. You have to take off the pressure on your heel and retrain your foot how to move from heel, to middle, to toe again.” This felt like a setback to me, until I realized that by using one crutch, I was able to concentrate and be deliberate about how I was using my foot. After all, due to the pain, I’d been walking incorrectly for over 10 years. Retraining takes time…and a whole lot of patience.

A single crutch became my “companion” for several weeks. At the same time, I felt older, as if I had suddenly aged several years overnight. Was it because I was moving slower than usual? Or was it the darn crutch? Even though I knew that without the one crutch, I would not have been able to focus on re-learning how to walk properly once again.

The combination of slowing down and using an assistive device certainly served to remind me I was not getting any younger—and I don’t see this as a negative, but a fact; we’re all aging, Using that one crutch was crucial to my recovery.

I hope that some day soon, we will view slowing down or using assistive devices as positive, rather than negative. Just because we may need to rely on canes or crutches to help us does not mean we’re “old” in the traditional, stereotypical manner that accompanies aging. Sometimes growing older just means we may need a little help. After an accident we may also need help. Neither are negative, but simply facts of life.

You thought making the decision to move your parents into senior living was tough? Not being allowed to visit is ten times harder. Most senior living communities are locked down due to the Covid-19 pandemic. No visitors, which includes family members. The original reasons for having your mom or dad move into senior living haven’t changed, but since then, the world has changed. The idea of not being able to visit feels unfair, even mean-spirited, yet it is imperative during this pandemic.

Skyping with my dad

You have the same feeling as when you were little; you want your mom or dad to be with you in times of uncertainty. Of course you want to see them. I want to see my dad, too, but because of Covid-19 travel restrictions, I won’t be making my regular visits in the foreseeable future. This means I won’t be able to see or hug my dad, or resume our cribbage tournament. We have had to find new ways to “see” each other. Although he resisted Skype at first, we are now enjoying our electronic visits. During one call, I was eating chocolate and my dad said, “I’d like a piece, too.” To which I answered, “Too bad; it’s all mine.” We laugh and talk seriously. We share programs we’re watching, books we’re reading, and walks we’ve taken. It’s not the same as in-person visits, but as my dad always says, “These are the cards we’re dealt.”

We’re all navigating very uncomfortable times, and to top it off, the care of your loved ones is in the hands of the senior living care team, people who may still feel a bit like strangers. How can they love your parents the way you do? They’ve only known your parents for a couple years, while you’ve known your parents for a lifetime.

I’ve worked as a manager in all levels of senior housing and I know that the professionals who look after your parents grow to love their residents—your parents—unconditionally. They become a second family. The news often reports on the negative aspects of senior housing, and there are issues, I understand that. What is not reported are the mundane, day-to-day interactions that staff members have with your loved ones. The countless smiles they exchange, the warm greetings heard in passing, and the endless patience in listening to familiar stories shared, perhaps many times. The list goes on and on.

Senior living is not perfect. Home care is not perfect. And certainly, you taking your parents into your home at this point would not be perfect, either. It’s too easy to question everything during a crisis, even decisions that were soundly made.

When we come out on the other side of this pandemic, we probably won’t be returning to normal. As with any change, we will create a new normal. Connecting with my dad electronically will be part of that. I see senior care communities also using technology, or doing something as simple as setting a chair by a window, so that family members can visit with only glass between them.

For someone with dementia, this type of virtual visit can be complicated or confusing. Before the crisis hit, I helped move a man into dementia care. His loving wife had reached the end of her ability to provide care, and even though she knew this was the best decision, it was still extremely hard.

Now she can’t physically visit him. Both she and the community where he lives are in Covid-19 quarantine. One of the creative ways she has been communicating with her husband of 60-plus years is sending large-font emails, complete with pictures, to the activity director. The staff then prints off the emails and after reading them aloud to him, leaves them by the bedside. This allows her husband to “hear” her words as many times as he chooses. Because of his dementia, he may not always understand his wife’s words, or why she isn’t physically there, but I trust something reaches him. Hearing her familiar words will touch an emotional cord even if he’s unable to acknowledge their effect, out loud.

We don’t know whether or not people with dementia understand lockdown due to Corona virus. It’s not a very digestible concept for many of us either. There is no need to “make them” understand or explain why you can’t visit. What is important in these trying times is to trust that the team of people who we consider essential, is caring for your parents. They are taking necessary precautions to keep your loved ones safe and disease free. And most importantly, many of them love your parents. It’s not the same love that you have for your parents, but it is a kind and patient devotion.

We will get through this, even if the “new normal” hasn’t yet been determined. In the meantime, it’s important to remember that something as insignificant as a phone call to your loved one can make a world of difference for both of you.

Instead of fighting the February blues, I have been inviting surrender into my life. I returned to one of my favorite poems to remind me once again of how to “be helpless, dumbfounded, unable to say yes or no.” The poet Rumi talks of allowing “a stretcher of grace” to scoop us up, trusting that when we surrender, “miraculous beings come running to help.” I think a little magic is just the ticket, especially in the ‘February times’ of our lives.

Zero Circle

Be helpless, dumbfounded,
Unable to say yes or no.
Then a stretcher will come from grace to gather us up.

We are too dull-eyed to see that beauty.
If we say we can, we’re lying.
If we say No, we don’t see it,
That No will behead us
And shut tight our window onto spirit.

So let us rather not be sure of anything,
Beside ourselves, and only that, so
Miraculous beings come running to help.
Crazed, lying in a zero circle, mute,
We shall be saying finally,
With tremendous eloquence, Lead us.
When we have totally surrendered to that beauty,
We shall be a mighty kindness.

Rumi, 13th-century Persian poet, jurist, theologian, and Sufi mystic.

This is often a fitting metaphor of what happens as we start down the caregiving path. We can’t imagine putting an adult diaper on our husband, but incontinence creeps up and soon we find ourselves searching YouTube videos on how to change adult depends. Incrementally, the barriers are being broken down, and what we once said, “I draw the line at,” we find ourselves doing. We never dream we’d be cutting up our loved one’s food, let alone feeding them.

The truth is, much like the frog in the fable, these changes don’t all-of-a-sudden happen. Over time, we adapt to many changes and we enter into a series of “new normals.” What once was unthinkable has now become “just how it is.”

At the same time we are adjusting to the new normal, our stress levels slowly increase. We may be eating more often and less healthy food, exercising less in favor of another hour of sitting in front of the tube. We stop dining out because it’s embarrassing or just too difficult. We don’t invite friends to visit and we stop reaching out. Isolation creeps in and we just can’t put a finger on why we’re feeling gloomy.

I wish I had a magic pill I could give to the thousands of family caregivers who are beating themselves up because they feel they need to handle all the care on their own. This pill would do two things: First, it would engage the left-side or logical side of your brain, sending you the clear message that you are doing everything you can, to the best of your abilities. The second thing this pill would do is ignite your inner self-worth and trigger the message that self-care is vitally important. How can you be prepared for the emotional toll and strain of witnessing your loved one fade?

Unfortunately, I can’t offer a magic pill, only my encouragement to be both gentle with yourself and to ask for help. You are The Unexpected Caregiver. Learn all that you can, lean on others, and understand that small changes will creep up on you. Be prepared to have someone close to you point out that the time has come for you to seek professional help. Don’t be the frog who unknowingly drowns because it got used to the heat.

Article first appeared in “Southern Minn Girlfriends”

Not knowing what I’d find kept me in a heightened state of fear. I ran scenarios of what I would do depending on who I found–awake mom or passed-out mom. I dreaded coming home, so instead, I kept ridiculously busy with extra curricular school activities. But that, too, was exhausting.

When I’m exhausted my emotional brain gets triggered. I receive panic messages: “You’re not safe! No one likes you! You can’t fix this or anything!” It’s very difficult to accomplish anything logical when the animal brain kicks into high gear. I don’t find myself wanting to run, so much as wanting to crawl into bed and “sleep it off,” hoping all the discomfort simply goes away.

I’ve grown to understand all those deep-seated emotions can easily be triggered by lack of sleep, an overload of external stresses, or a casual comment that hits me the wrong way. I’m also learning that when I’m triggered, I need to stop, acknowledge the feelings, understand where they come from, and take a deep breath. Sometimes I need to dance or go outside and work. Sometimes I need to cry and call a friend for support.

Caregivers can often get triggered, especially when they’re already beating themselves up for not doing enough or being enough for either the person they’re caring for or their families. You’re already tired and stressed because of the job of giving care. It’s as if your animal brain is just waiting to pounce on any trigger and throw you into panic mode.

Understand that fear is exhausting, that you’re already in a tender place. Write a note to yourself that says, “This is my animal brain on high alert. It’s not reality.” And then reach out to your trusted friend for extra support.

I get it; When caregiving is unpredictable, it’s extra challenging to respond in a calm manner, especially if you hold deep-seated past fears. Now is the time to change your old, outdated messages. Let go of the irrational fear messages and replace them with a new mantra, such as “All is well.” That message will seem fake and uncomfortable at first, but will serve you better in the long run. It’s also much less exhausting than living in fear.

This fall I was recognized for 30 years of service as Director of the Norwegian Language Adult Program, as it is called. During those thirty years, I’ve lost my mother to cancer, my grandparents to assorted illnesses, my best friend to Young Onset Alzheimer’s disease, and have attended the funerals of numerous Skogfjorden participants. Over the years, I’ve been able to provide a nurturing space to hundreds of participants and for myself. For those of use who have been giving care, this camp has been a godsend.

I’ve been extra fortunate to share (many of) these camp sessions with my brother. We are both family caregivers and have two siblings with Huntington’s disease. Our time at camp has given us the gift of togetherness without the duties of caregiving. In that space, Dak, aka my brother Steve, wrote a poem for me. I was awestruck. My wish for all family caregivers during November, National Family Caregivers Awareness month, is that you find time for yourselves–time that allows the magic of rest and time to play which, in turn, may bring forth your creativity.

In the Mountain’s Shadow by Dak Gustal
(Skogfjorden, 2018)

Let us slowly go up

the mountain together.

We’ll pass into it once again

as deep as shadows

Until not even a strong wind

can find a way between us.

Fjellskuggen av Dak Gustal
(til norsk ved H.C. Midelfort og P-I. Bergan, Skogfjorden, 2018)

La oss gå langsomt

sammen opp i fjellet.

La oss gå inn igjen

så langt som skuggene når

Slik at selv en sterk vind

finner ikke plass imellom oss.

There’s a lot about giving care that is neither fun nor funny. Helping your parents and loved ones will test your balance and stamina. It will stress your spouse, your family, your work life, perhaps even your basic sense of self. Sometimes, it will bring you a level of joy that will surprise you. Other times, it will bring you down.

Have fun with the every day tasks. When my friend showers his wife, he announces her exit from the bathroom, “Make way for the queen.” Don’t take it personally when a loved one forgets who you are. I had one client join me and his wife at the kitchen table. As he sat down, his wife turned to me and asked, “Who is that?” Without hesitation, the husband said, “It’s me, Tom, your husband.” The wife looked at me with wide eyes and said, “Another Tom?” And we all laughed and agreed that another ‘Tom’ would be a lot to handle.

It’s okay to laugh, as long as you’re laughing with them. They haven’t lost their sense of humor. When we laugh, we are playing. When we are playing, life is fun…and that makes all the difference.

She and I met in high school chemistry class. We passed notes to each other and sang the same wrong words to Phil Collin’s “In the Air Tonight.” We enjoyed preparing for prom way more than the prom itself. She is the one who has explained life’s little subtleties to me. In many ways, she has been my stronger self.

I remember falling apart sophomore year in college. I drove many of my friends away, demanding too much from them. But not her. Not my BFF. When I showed up at her dorm room in tears, she held me, cried with me, and listened to the recap from my recent therapy session. She also rescued me when I was out way too late at night and needed a quick French braid in order to be presentable for a choir performance.

The author of Still Alice brought Early Onset Alzheimer’s disease to the big screen. Lisa Genova, a neuroscientist, wrote a touching story about a university professor who, at an age we don’t normally expect, developed Alzheimer’s. I interviewed a 40-year-old man on my radio show who also had Early Onset Alzheimer’s disease. He described how exhausting it was, going from one doctor to another, trying to get an accurate diagnosis.

When my friend started showing symptoms, we had each turned 50. Both of us were feeling more forgetful than usual and more emotional than normal. Another radio show guest I interviewed was a medical doctor specializing in hormonal changes. I was thrilled to interview her, and couldn’t wait to call up my friend to report, “I think we’re both going through perimenopausal changes. Not to worry!” We spent a lot of time on the phone talking about natural supplements that could help, and whether or not we should seek hormone replacement therapy.

Then on one of my visits, my BFF asked if I wanted a cup of tea. I watched her hold a cup, take out a tea bag, look back at the cup, and then at the tea bag several times, before finally placing the teabag in the waterless cup. The simple act of making a cup of tea had become a confusing task. As I watched her, I thought to myself, “Oh crap…this is not just hormonal changes….”

When she eventually received the diagnosis, she was already struggling with finding words and making change from $20 bill. At one point a woman approached her in a store and said, “I love your jacket; where did you get it?” My friend just stared at her and I jumped in and said, “Oh you’ve had that jacket for a long time.” I looked at my friend, “I don’t remember where you got it,” I continued, nodding at her while holding her around the waist.

Like she filled in the blanks for me, explaining what certain phrases or words meant, I was now responding for her, helping her “be normal” in a world that doesn’t know how to recognize a young person with dementia who may not be able to respond.

My dear friend died Aug 17 surrounded by her family. I was in the air, returning from taking care of my mother in law. My goddaughter picked me up at the airport and tenderly told me of her mother’s passing. I was able to say goodbye to my BFF’s body and help wrap her body in a sheet. Another layer of grieving now begins.

I will miss her tremendously. Her father recently said to me, “Thank you for your years of friendship with my daughter.” I am grateful that she chose me as her BFF.