TakingCareofGrandma.com

That Mom Feeling

For a while now, my grandma has referred to me as “Mom.”

Not directly TO me, but when she tells others about the person who is taking care of her, that’s what she says.

This week it clicked.

My grandma is constantly time traveling between the here and now and a chapter of her life where I hadn’t even been thought of yet.

I realized that often when she talks to me on the phone, she believes she is speaking with her mom.

The other night, Grandma went to bed and she said she needed to call her mom. I freaked out because I knew she was going to be calling me, and I still had to do the dishes. I helped her into bed and started washing the dishes. Sure enough, my phone started ringing in the other room. Thankfully she didn’t hear it. Once I was safely in my car, I called Grandma… and this time, I knew she thought she was talking to her mom. I had to laugh. It felt like I had just lived out a sitcom episode.

Last night, I talked to my grandma when she got home from her Bible Study and told her I’d see her in the morning. She called me back a little later to tell me about talking to Rachel and asked me to call and wake her up at 9:00. I couldn’t help but start giggling uncontrollably. The thought of playing the role of Jennie cracked me up.

So all this time, the lady who has been waking her up every morning and talking to her before she goes to bed… and setting up her pills and doing her shopping and everything else… is her mom.

Calling me “Mom” is her brain’s attempt to make sense of me and why I’m on the scene. She knows I take care of her, and she knows we’re very close.

In grandma’s dementia brain, that feeling is the one only Mom can give you.

I am very familiar with that feeling.

This week I very suddenly and unexpectedly lost my own mom.

She went to work on Monday and suffered a catastrophic hemorrhagic stroke. She passed on Tuesday.

Everyone has been asking me how I’m doing.

Remember as a kid when your mom told you to stay close at the grocery store?

I constantly and deliberately disobeyed my mom’s instructions (what can I say, I was a Strong-Willed Child).

Once when I was little I wandered off in the grocery store to go look at the toys. I couldn’t find my mom and I was so lost.

That’s how I feel right now.

As a woman, your mom is normally the first person you call in times of trouble.

This week, I finally understand why my grandma sees me as her mom. It is a bittersweet feeling.

Please pray with me for comfort, peace and strength as I brave ahead on this journey with my grandma while grieving my sweet mother. It’s not easy to hear the M word right now.

Rick’s Story: going from bachelor pad with Grandpa to the Memory Care Facility

I met Rick in the Caregiver Collective, a Facebook group for millennials who care.

I’m honored to have Rick share his experience as a male millennial caregiver. Rick cares for his grandpa.

My interview with Rick helped reinforce the falsehoods of two common misconceptions about caregiving:

  1. caregiving is a female thing. Within the millennial generation, it’s almost a 50/50 split between males and females.
  2. caregiving is not location-based. It doesn’t matter where you nor your caree live… whether you live together or separately, close by or far apart, if you are contributing to the well-being and daily life of someone you love, you are a caregiver.

Watch this video and lean in as Rick shares

  • how he feels he was in a right-place-right-time situation
  • the emotions and challenges involved in watching his grandpa decline
  • and how he is recovering as a “post-caregiver” and coping with guilt after his grandpa transitioned to a facility.

In our interview, Rick shared the importance of reaching out for help, as well as not getting caught up on comparing your caregiving sandwich to that of others.

Rick is a great guy and an example for many to follow. His love and commitment to his grandpa shines through his story.

I love that he found a lady willing to support his caregiving role. Join me in wishing them the best of luck for a long and happy future!

One Year of Blogging: Challenges

Nobody’s perfect. Even though you might see me as a “caregiving expert,” I am still human. I have my stumbles. Things people say and do trip me up— hold me up, sometimes for days….

Even though outwardly it may seem like it’s all peaches and cream over here and I GOT THIS, I’m constantly on my toes,
predicting calamity, adjusting my strategy to counter interference from complexity, responding to all of the people and pressures calling my name, all while trying to maintain some grace and humility on this journey

Reflecting on the past year, here are the major challenges we’re working on overcoming or reined victorious as our rock has completed its 365 rotations. They might sound a little familiar, because they are the same struggles I shared with you last year.

What can I say?
I’m only human.

Dealing with Decline

We are all on a journey with the same outcome in the end. As family caregivers, we must press on, knowing that we are fighting a losing battle.

I carry it with me everyday. The anxiety that I must maximize the efficiency and joy of every single minute, because our precious time is limited (See: It’s Only Temporary).

This year, the connection in my grandma’s brain that helped her remember my relationship to her broke. She’s called me everything from her sister to her cousin and told me people like Uncle Kenny told her “XYZ” thing, when I know it was me.

Even though I have been assuming for a while she didn’t know me but was just masking her dementia, it has become very clear she doesn’t always recognize me.

I wonder, how much longer can I be the Head Caregiver in Charge if Grandma doesn’t remember I was ever in charge to begin with?

Working as a Team (the struggle continues)

forming storming norming performing

All high performing teams have a life cycle. Since last year, we have had a number of changes and transitions when it comes to Grandma’s supports and Sidekicks staffing pattern. Right now, our new team has moved past storming into norming. It feels good 😎😎😎

Despite my best efforts to improve, working as a team has always been challenging for me, especially when it comes to Grandma, because I have been in charge of SO MUCH for SO LONG. Sometimes it’s hard for me to accept the fact that others take some of the stuff off of my plate or let go of it altogether.

Also, I’m an only child. A loner, Dottie.

My friend, Gordon (@gordondym), a fellow family caregiver I met in the #latenite #carechat, calls it “I Spot it, I Got it” mentality.

I’m still working hard to disrupt this mindset by delegating tasks and making sure people have all the pertinent details of how I *expect them* to do that task* so I’m not setting them up for failure and setting myself up for disappointment.

That, and practicing the skill of letting it goooooooooooooooooo!

Managing Work-Life Balance

I’m the kind of person who never feels satisfied unless they are doing something. Sometimes, I find myself feeling slackerish from never stopping to take a break. And then I need to take a break.

I lovingly coined it “conserving energy,” to relieve the guilt I feel from not accomplishing as much as I want to everyday.

As cute as conserving energy may be, now that I’m self employed, time management has become of prime importance. I can’t spend too much time piddling around.

You know the cycle. We feel stressed out. We need to take a break. We are so tired from not taking one, that we give ourselves an even longer break. Then, hilarity ensues as we work to get ourselves back on an even keel.

Photo: handwritten schedule of Rachel's life

I’ve been working on blocking my calendar to include conserving energy so I don’t have to feel bad about it.

In fact, I’ve been working on blocking my calendar for a lot of things – Grandma, my graphic & web design business, my Certified Caregiving Consultant activities, my Sandwiched KC work, and yes, TakingCareofGrandma.com posts and promotion.

I have spread myself pretty thin, huh? Managing the projects that pay my bills (read: work), while making time for the projects that give me joy is always a challenge. That is why I’m trying to rely heavily on leveraging my calendar as a tool to accomplish my goal of taking over the world (MWAHAHAHAHA.. jk kind of).

In my short years here on earth, I’ve fallen prey to Parkinson’s law (the adage that “work expands so as to fill the time available for its completion”) far too often to let the universe suck my time away from me.

Putting Space between Loss

If you have been keeping up with us here at TakingCareofGrandma.com, you know that last year I lost a very close friend of mine after marching onto the front lines to care for him in the final weeks of his life.

Grief comes in waves. Sometimes big, sometimes small. It hits me everyday, sometimes out of nowhere. A person I see at a party who crossed our paths while he was here on earth with us. A familiar smell. A particular date.

All we can do when we lose someone is put some space between our loss and continue to press onward, recognizing that our memories and love for our person will always remain.

I thank God for the challenges I meet on my path.

If it weren’t for experiencing adversity and making mistakes, we would never learn and grow. In our stumbles, we find our steadies. That’s when we reach resilience.

Bring it on, world!

Here’s to the next year of adventures and mishaps!

I hope you’ll stick around with me for the TCG Blogiversary Party activities throughout the month!

TakingCareofGrandma.com Blogiversary #TCGTurns2
Coming up:
Be sure and join us for the Blogiversary Party on May 23, 2018! We will feature videos from real life millennial caregivers.

Get the details about the blogiversary festivities as we add events and more info becomes available! The link is: http://rachelh15.sg-host.com/blogiversary 

INTRODUCING TCG Blogiversary Celebrity Guest: Rick Cabral

Rick Cabral is a millennial family caregiver who cares for his grandfather.

It was so great getting to know Rick and very important to me to share his experience because the male family caregiver experience is often overlooked. However, research shows that millennials are caring in increasing numbers. In fact, nearly half (47 percent) of millennial
family caregivers are men (AARP, 2018)

In our time together, Rick shared what it was like to care for both of his grandparents, then support his grandfather through the loss of his grandmother, and help him through the transition to assisted living.

Rick (like many other millennials), at times, struggled to find a work-life-caregiving balance, but managed to find the love of his life, who even went out on dates with Rick and his grandpa.

Rick touched on the guilt that caregivers often feel while trying to pursue their own life aspirations and the common feelings of loss and remorse that caregivers have when their loved ones have to move into a facility.

One of my favorite things Rick shared during our interview was the following quote:

I can’t wait for you to hear Rick’s story at the TCG Blogiversary part on May 23! At the celebration, you will meet Rick and four other amazing family caregivers. I promise you will be inspired!!!

Get the details about the festivities and sign up for updates about the TCG Blogiversary here: http://rachelh15.sg-host.com/blogiversary/

Conserving Energy: How I Channel My Guilt To Achieve Self Care

If you’ve ever heard me talk about taking time out for myself, you might have heard me say I was “conserving energy.” It’s a phrase I created to reframe my feelings of guilt for being idle into something positive.

The calamity that surrounded my initiation into caregiving was brutal. During that time, there was no rest.

Once I got my grandma straightened out, though, for a while it was a pretty smooth ride.

Thanks to my grandma’s lingering independence and her creature of habit nature, there were many things she could still do for herself, and she could spend large chunks of time alone.

Much earlier in my caregiving experience, I would look at other caregivers and feel guilty for being so worn out with so many others out there also working full time that:

  • Provide hours of intensive physical assistance
  • Overhaul their living situation to keep a LO out of a nursing home or because it seems like their only option
  • Manage caring for multiple humans, including children

I’m a single adult.
I don’t have any prospects or kids.

Even when I had a 9-5, I didn’t feel like I was “sacrificing my time” or “uprooting my life” when I was spending every evening and all weekend with her.

I thought had it easy. I didn’t deserve to take a break.  

It took me a long time to embrace the fact is that everyone’s journeys are unique, with many factors impacting the direction of our paths at any given point.

Don’t get me wrong, even when things seem easy, caregiving is still hard. Even if you’re not providing a lot of hands-on help, the emotional and spiritual aspects of caring for a loved one on a downward descent can take a toll.

Last year around this time, I had no idea that I would be getting a crash course in the exact kind of caregiving that I was feeling guilty for not experiencing myself.

My dear friend, Calvin, for whom I was guardian and the only person in his life not paid to care about him, was discharged from the hospital on hospice. His support provider (and he needed 24 hour supports due to his disabilities) walked out on us when he got home. I became Calvin’s sole caregiver until the end of his time here on earth. I quit my job in a confused and uncertain panic, trying to clear my plate of everything that was stressing me out and tying me down at the time so I could be with him and manage Grandma too.

At the time, I was in denial about his condition and didn’t believe he was at the end of his path. When he came home, I spent days round the clock with him, only getting a break to come home and sleep or go take care of Grandma. Over the course of three weeks, he declined—all the while I did everything for him and spent every waking minute by his side, blind to the signals he was sending me that he was done, not believing he was really going to pass away.

It was grueling.

It took me a month and a half to recover from all of that. My first intimate encounter with death. A gaping hole in your heart that feels like you’re holding your breath but can’t let it out.

Everything happened so fast it was hard to make sense of it. I spent days reliving the final moments. Stuck in a loop, I’d move on and then moments later I’d be right back in Calvin’s house.

Into the second month of recovery, overwhelmed with guilt for not getting anything accomplished… still weary and overcome with grief, I had an epiphany. I wasn’t just in recovery from Calvin’s death, I was also having anticipatory grief for Grandma. I started having visions of going through the same thing with my grandma, realizing that our journey would have the same inevitable and imminent result.

I blamed the magnet in my bed for my lack of desire and motivation to do anything beyond basic.

I had to let go of those feelings of loss and focused on what I had right then and there: I still had Grandma. I have great memories of my friend and a wealth of wisdom from being part of his life. I had a new business – remember, I had just quit my job! I desperately needed to start bringing in money but also owed some work debt with some very strict deadlines…. Thanks to a few pep talks from people like my mom and my OG and the shrinking funds in my bank account, I woke up and got my proverbial shit together and started working on my projects again.

I even got my act together to get some other helpers in there besides myself, which means time off. More time for myself to focus on MY income, MY priorities, MY dreams.

Of course, I know I deserve to rest. But just like everyone else, I have moments when I feel like I should be doing more.

Certainly, things can be easier. (They can *always* be easier.) I still find myself slipping into guilt mode sometimes,  because my grandma is still:

  • Able to be alone for small chunks of time during the day and still mostly sleeping through the night
  • Doing a lot of things for herself
  • My only major caring commitment

But now, we’re in a new territory in our journey.

The organization strategies and tools I’ve relied on over the past three years are starting to fail. No matter how many different ways we give Grandma the information, it’s just not sticking. She is needing more and more help and is spending less and less time by herself.  

The end is impending and inescapable..

Things are gonna get bumpy.

So when I hear that negative loop emerging in the back of my brain telling me I should be doing something rather than what gives me joy in that moment, I just remind myself that I’m “conserving energy,” and the grief and fear melt away.

Not feelin the holiday spirit? There’s nothing wrong with you

It’s the holiday season! Time for presents and big meals and delicious sweets and good cheer…. right?

Not for everyone. If you’re feeling like, “whoop-de-do,” don’t worry. It’s natural sometimes.

For some of us, especially after or amidst a caregiving experience, we’re at a point in our adult lives where the magic and whimsy of the holiday season literally has no effect. We are awakened to that which is truly valuable in life, and we can’t latch on to the commercialism and consumerism of the season.

The holidays are all about spending time with loved ones. For some of us, the thought of getting together with our families has us reaching for the Pepto Bismol or a wine glass, because we don’t have the same warm, loving relationships like the ones that are shown in the mass media.

Some of us have lost a close person in our lives and are having a time dealing with the empty space next to them at the typical traditions. If looking at Facebook Memories this month has made you cry, you are not alone.

If you’ve experienced a loss, don’t have the best family relationships, or maybe you just had a rough year, it’s normal to feel like a Charlie Brown Christmas tree.

No matter what your reason, don’t let anyone make you feel guilty (including yourself) for not catching the holiday spirit.

It’s hard not to get down on ourselves, but we have enough to deal with without making ourselves feel like we aren’t human or have some kind of disease when we find ourselves switching the station when the Christmas tunes come on or passing on invites from friends and family to holiday parties.

Try to find one small thing that YOU enjoy about the holidays you can do to spark the whimsy and warmth of the season. Take some time to show yourself some love.. and then, just maybe, like Charlie Brown’s tree, you’ll start to perk up a little.

http://gph.is/1cfRrrB

@takingcareofgrandma