The Caregiver Crisis – LIVE!

Join me and Mim Senft of GW4W (Global Women 4 Wellbeing) today at noon! Only $10, and the proceeds go to charity!

Click here to get your tickets.

See you soon!


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So Gifted

Author’s Note: My mother died in April, 2015. This article was originally written in 2014, and now appears as a chapter in my book, “Dementia Sucks: A Caregiver’s Journey – With Lessons Learned.” The message is worth repeating, especially at this time of year, when so many of us are either grappling with caregiving or missing those who are now gone. May this bring you some clarity, peace or enjoyable diversion. – Tracey

presentGrowing up, I was often disappointed by my parents’ lack of awareness of my needs. We were not at all wealthy, and my folks had other things on their minds. The baby doll I had to have; the cool watch I really wanted for my birthday; a bike that could be adjusted for my short little legs; these material gifts occasionally appeared, but usually long after the initial urgency had passed.

What I appreciate most about my upbringing is that I learned to VALUE things. My parents encouraged me to work for what I wanted. I did chores at home for my allowance. I got my working papers at 14 and started a part-time job while in high school. I haven’t stopped working since.

I’ve always loved to give gifts. Knowing someone well enough to guess what might please them, presenting the carefully wrapped item, watching as the accompanying card is read, feeling the anticipation as the paper comes off and hearing the response. Getting it right is so satisfying.

As my mother aged, she would try to give me her stuff. While I appreciated that she no longer needed certain things and wanted them to go to good use, it was hurtful to me when she’d try to return something I’d given her. Once her independent life ended, my perspective changed. I rescued a number of things she could no longer keep. I gave away much more than I kept.

Now, the kinds of gifts my mother gives me come through her windows of lucidity. These are double-edged swords that cut two ways.

This year, my mother’s condition has deteriorated a great deal, and she hallucinates constantly. Her speech is in- comprehensible most of the time. She mutters, talks to people I can’t see, and she can’t stand to wear her dentures, making her articulation worse. I typically spend about an hour with her at her group home, watching her rip up magazines, roll up paper tubes, reach for things only she can see, calling out to who knows whom. I hug her, kiss her, try to talk to her. I ask if she knows me, and she shrugs. Eye contact is rare.

As I get ready to leave, something clicks and she plugs in for a moment. And that’s when she gives me the goods. In August, after I’d seen her through a bought of sepsis, she gave me a big one. She’d slept on a sofa through most of my visit while I hugged her and sang to her. I was taking my leave, saying good bye. Suddenly alert and seated in her wheelchair, she looked me straight in the eye, and clearly told me “Don’t feel guilty for leaving me here.” (I didn’t, but it was great to hear it from her).

In November, as I kissed her good bye, she looked at me and asked simply “You know what I do?”

“No Ma, what?”

“Love you.” I made it home, told my husband what she had said and cried.

Last week, after an hour of no conversation whatsoever, as I rose to leave and kissed her cheek, she said “Be careful how you go. I love you.”

My mother has a good appetite and eats well. She no longer receives any medications, as her prognosis is so poor. She’s on hospice, which is a service that provides comfort and monitors her for pain. Her affection for her care- givers is evident. On some level, in the shifting quicksand of her existence, my mother knows she’s in the right hands, that she is loved and she will never be alone or afraid. And that’s one of the last gifts I’m able to give her.

Letting me know that she knows is one of the last gifts she’s able to give me.

Enjoy your life and please let those you love know how you feel. Shared presence is the best present of all.

Posted in beliefs, caregiving, dementia, Family, gifts, life changes | Leave a comment

My AlzAuthor Post!

I am honored to be part of a special club: dementia caregivers who wrote and published books about our journeys. My guest blog post on the AlzAuthors site is here. 

The perspectives offered by caregivers are special, very personal and can help others to learn and heal.

Thanks for your support!

Posted in book, caregiving, dementia | Tagged | Leave a comment

Penny for My Thoughts

Knowing something’s coming doesn’t mean you’re ready for it.

From the day I brought Penny home, I knew she was a short-term gift. She was just turning 12. Yorkies are supposed to live longer than bigger breeds, but anything past 15 is a stretch.

So much of our time with Penny was joyous. Her fierce intelligence, confident willfulness, stunning courage and obvious sense of humor instantly cemented her place in our lives. She was a glorious cartoon character come to life. And she loved us for loving her.

Her age presented challenges which we overcame: we walked her frequently to build her stamina, enabling her, at her best time with us, to walk a full mile on her own little legs. Both of her knees had luxating patellas, so they would dislocate and she would limp. I took her to a holistic vet who taught us physical therapy exercises and prescribed supplements that gave her mobility back. She peed in her sleep, and I found homeopathic drops that stopped it, so she could sleep on and with me in comfort.

Penny was also a wonderful traveler. She loved the car. She enjoyed meeting new people who would tell her how pretty she was. She enjoyed frolicking in grass and sniffing trees where other dogs had left their impressions. We had a sling to carry her into stores with us, so we wouldn’t be faced with having to leave her in the car unattended. And people loved to see her riding in her pink carrier with her little smiling face poking out.

Play could be consuming for her, particularly when I’d buy her a new toy. If it had a squeaker (and most did), she would rip at her quarry with her perfect sharp white teeth until it no longer squeaked. Depending on the object, this could take days. If you tried to take the toy from her, the fierce growl that came from her let you know she meant business. But she would let go so you could grab, throw or play tug of war with her. Playing is more fun with humans to keep things lively.

And humans were her favorite creatures by far. She tolerated other dogs until they would sniff her butt, an offense that would earned a snarl and snap.

Fletcher, our insanely friendly cat, was nuts about her. He’d keep a respectful distance, but waiting for her to sleep, he would creep in for a cuddle at every opportunity. And when she woke, she’d recognize the benign nature of their position and throw her head back down in surrender to his embrace. If he got too overbearing or invaded her space too brazenly, he’d lose a chunk of fur for his transgression.

During the time we spent together, I never took Penny for granted. I would observe her, sitting in her bed in my office, snoring contentedly; frantically alerting me to her need to go out; ferociously engaging me in play; begging relentlessly for her favorite biscuits (or whatever we might be eating); or simply looking at me with love and anticipation. My heart would fill, almost to bursting, with love and gratitude for this adorable little dog. I just loved having her, knowing her, caring for her and watching her enjoy the life we provided her. I am forever changed by this relationship. I will always miss her, but I will never regret the pain of losing her, because our time together was so amazing and rich.

Tuesday, October 23rd, 2018, was the day we took Penny for her last visit to the vet. She was ravaged by kidney failure. I was grateful we could help her cross over.

Nothing could have adequately prepared me for this. And yet, everything up to this point in my life has. I am so sad she is gone, but so glad she was able to stay for a bit. Thank you, Penny. I know I’ll see you on the other side.

Posted in aging, caregiving, cats, death, dog, dying, Family, incontinence, life changes, pets, physical therapy | Leave a comment

Sanity Snack Guest Blog

I was invited to share caregiving advice as a guest blogger. You might want to take a peek. It’s short and sweet.

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Life Is But A Dream

When I was little, I had intense and frightening nightmares. A repeated scenario placed me behind the wheel of a car, forced to drive when I could not yet see over the dash or reach the pedals, ultimately driving off the road into a body of water before I’d wake.

(Strangely enough, when I first moved to Ringwood, NJ in my forties, I recognized some of the local roads from those nightmares. Fortunately, the worst one, the Westbrook Road Bridge, has been recently replaced with a new bridge, so I feel pretty confident that the dreams were metaphorical rather than prescient).

I was a fan of “Dark Shadows,” a daytime serial that featured vampires, witches, ghosts and other preternatural creatures. Characters from this show would occasionally appear in my nighttime excursions.

And there were a lot of anxiety dreams: getting to school too late for an important test, being observed, naked, by other people in odd situations, being walked in on when using the bathroom, and other embarrassing sequences.

The worst was the feeling of falling, followed by sheer terror, unable to move or open my eyes. I’d scream silently for someone to please wake me up. Eventually, I’d shudder awake, breathing hard and feeling grateful to have finally broken the grasp of the demon that held me in that blank purgatory between dream and waking life.

These frightening night sojourns made it hard for me to look forward to sleeping. I would try to control what I would dream about by thinking of every horrible, scary idea I could possibly conjure to inoculate myself before the sandman came. Sometimes, my dreams would be benign or forgettable. Other times, they’d be at least as horrifying as the pre-dream ritual images I’d run through my tortured mind.

Many a night, I’d lie awake, listening to late night talk radio. I’d sit by my window and watch the neon sign from the amusement park two blocks away flash its upward laddering pattern over the top of the row houses across the street. I’d listen to the cars on Flatbush Avenue. Hearing sounds of life outside made me feel better, less alone.

I chose to become a psychology major half way through my undergraduate studies. I learned a lot of valuable things about human nature, including my own.

And I’ve gone for therapy from time to time. I believe we all need periodic “tune ups” to lead happy lives, and I’ve sought help whenever I’ve felt the need.

Over time, I came to understand the meaning of some of my dreams. I believe they are messages my unconscious mind serves up because I tend to ignore certain information during my waking life in order to get through the day. These messages are important. That’s why they’re intense, so I’ll pay attention.

The driving dreams came from my feeling of “being in over my head” as a child. I worried about my parents. I was very sensitive to their anxieties and stresses. My mother was reliant on me for emotional support from a very early age.

Anxiety dreams are pretty common, and they allow us to express our deepest fears without direct consequence.

In the last several years, I have learned some very important lessons about the things we tell ourselves and how these messages impact our lives. The bedtime ritual I implemented as a child to ward off bad dreams, thinking of every terrible thing I could come up with, was actually counterproductive. It was “superstitious” behavior, believing that dreams came from somewhere else. I didn’t understand that everything I dreamed came from ME. I was trying to control the growth of a monster by over-feeding it.

A better idea, and one that I have come to embrace, is to think of beautiful, wonderful, delightful things; things that bring me joy; things that I WANT to happen.

Consequently, now I LOVE to sleep. It’s rejuvenating. It’s a time to rest, and a time to process information and solve problems. It’s mighty interesting, and a lot more satisfying.

What I have come to realize through so much information I have ingested, is that our lives are what we BELIEVE they are. Our original beliefs are based on those espoused by well-meaning adults (parents, grandparents, family, neighbors) that were passed on to them. These ideas have no basis in fact. They are simply ideas that were accepted by the previous generation, adapted and insinuated through teaching and parenting. And mostly, what’s at the basis of every BELIEF is a LIE.

Everything my parents taught me was aimed at protecting me. Don’t go to that school you want to attend; it’s too expensive, in a terrible neighborhood, you aren’t old enough to go there by yourself and we aren’t taking you. Expect the guy driving the car closest to you to do the stupidest possible thing. You can’t go to Europe by yourself! You’ll be kidnapped! Always expect the worst outcome. Fear will keep you safe.

Many people suffer from these fear-driven belief systems. And they tell themselves things like “this is too good to be true.” “If they want me, they can’t be that great.” “Rich people are all greedy and I’m not greedy so I’m glad I’m not rich.”

Here’s the thing: fear is all in your mind. FEAR = False Evidence Appearing Real. When you live your life in fear, you die a thousand deaths.

This isn’t magic, and I don’t pretend to have all the answers. But I will tell you that my life is much bigger, happier and fun since I decided not to be afraid. I allow myself to embrace beauty and prosperity. I am on a journey to become the best version of myself. And I deserve all the happiness and satisfaction that comes with that pursuit.

Is my life perfect and completely awesome? Of course not. But no matter what happens, I find reasons to feel gratitude every day. I enjoy the time I spend with others. I choose to focus on the positive aspects of every relationship I have. And I look forward to getting up every morning, refreshed and ready to take on the world.

I have no need for sleeping pills. Most of my dreams are pleasant, benign or forgettable. I haven’t driven into water in a very long time. And I’m happy to be who I am, where I am, in a very big, unconstrained universe.

I wish you the gift of believing in yourself and very pleasant dreams.

Posted in aging, beliefs, dreams, driving, life changes | Leave a comment

Absorb This

My little old dog, Penny, is a teacher. One of my dog sitters, who admits to having issues with assertiveness, has credited Penny with showing her how to be more firm and clear about her own needs. And today, Penny reminded me of another pending lesson.

My girl HATES being left alone. When she sees me sling my handbag over my shoulder, she knows I’m leaving the house. That’s when the barking starts, and I swear she sounds like she’s screaming “YOU SUCK!”

Since she’s become ill, Penny’s ability to hold her water has been compromised. Once upon a time, she could hold her bladder for four hours or so without too much trouble. Now, it’s definitely harder. She likes to go out every hour or so. And I keep a diaper on her when she’s in the house.

I know she doesn’t like going in the diaper. If she dribbles, it’s one thing. But an all-out whiz can’t be contained by her puppy pull ups, and she will leak on her bed and on herself. Physical discomfort aside, when she pees in the house, she looks mortified. She’s a proud little dog. I respect that.

Recently, she’s been voicing annoyance when I go to another floor of the house without her. My thought process at that time was “if I don’t get back up in time, she is wearing a diaper.”

And then I had a flashback to my mom.

When my mother resided in her last home, she had been incontinent for some time and routinely wore adult diapers. When I visited her, I could usually tell when she needed to go to the bathroom. She might not be able to articulate it verbally, but I could tell from her gestures and behaviors that she was uncomfortable, and if I asked her, she’d confirm my suspicions.

On one such occasion, I asked one of the aides if she could help my mother get to the bathroom. She responded “She’s wearing a diaper.” And I said, “Yes. And she needs to go to the bathroom.” The aide complied and took Mom to the bathroom where she could eliminate in a toilet like a real person.

The response, at the time, gave me pause. Was I supposed to say “Oh, OK, she can just pee in her pants?” If I wasn’t there to run interference, that’s most likely what would have happened. But when I could DO something about it, I did.

I will confess that I don’t always get Penny out in time to avoid wetting her diapers. Sometimes I don’t quite know what she wants. A lot of the time I follow her to where she leads me and “out” is NOT her goal. And I DO have to leave the house, attend meetings, run errands and go places dogs (particularly incontinent ones) are not welcomed.

However, I wanted to use this as a teaching moment for anyone caregiving someone who wears diapers. I personally have not worn a diaper since I was an infant, but I can only imagine the discomfort of having to wear a garment containing one’s own waste for any length of time. Whether it’s a pet, a baby, or a cognitively impaired adult, the condition can’t be enjoyable.

So, never let a diaper do the heavy lifting in waste removal. That’s not their purpose. They are designed as a temporary bridge, if you will, from a point in time when a body must unencumber itself to a near future that provides the opportunity to completely rid the wearer of all the unneeded materials and remnants so as to avoid any irritation or infection.

Don’t assume that because someone is wearing a diaper, they’re good to go. Put yourself in their place, and you’ll absorb my point.

Posted in aging, caregiving, diapers, dog, incontinence, life changes, pets | Leave a comment