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stroke

Death is birth in reverse. That’s what our hospice nurse keeps telling me every time I question a new behavior of my mom. And every time I find myself in the baby aisle at Target buying diapers, sippy cups, and picture books, I realize just how right she is as a caregiver for my elderly mother.

Read more: Tips for Caring for Elderly Parents

Caring for An Elderly Parent

Fifteen months ago, my mother had a brain aneurysm. My life, and my self as I knew it, changed dramatically in the months following as I recounted in this blog post and became the caregiver for my mother. And the dramatic changes continue.

I’m fanatical about researching things (just ask my friends and family who call me often to ask about everything from diagnosing a strange symptom to solving a household dilemma), so I’ve acquired an inordinate amount of information and family caregiving resources. And, the reality is that many of us have (or will) experience this same task of parenting a parent. I received a call from an acquaintance recently whose father had a stroke, and she said, “Tell me everything you’ve learned.” I asked her how much time she had. So, I thought I’d pay it forward and share some of the wisdom that I’ve learned after caring for my elderly mother

Read more: Parenting Your Elderly Parent

Advocating for Elderly Parents

Photo credit: Andrea Piacquadio

I have encountered numerous health professionals, who have each told me how my mom should act, feel, behave, and respond. But I can’t help but think to myself, “I have known my mom for 55 years – you’ve known her for six months. I’m the caregiver for my mother. “Doctors, nurses, and aides are tasked with taking care of her, but no one knows my mom better than I do. I’m the one who can tell when she’s got a UTI simply by her behavior (my mother cannot speak or gesture). I know she cries in the shower because she’s cold. I know she doesn’t like to sleep with socks on. Above and beyond, I know her better than anyone, so I will not stop advocating for my elderly mother

Caregiving for the Elderly

Photo credit Matthias Zomer

Initially, we took my mother home, thinking we could care best for her on our own. I planned to be my mother’s caregiver. Within a few short weeks, we knew we needed an extra hand or two. I placed an ad on a local website for caregivers, and my life became consumed with interviewing Certified Nursing Assistants (CNAs) and elder sitters. I asked for references, checked backgrounds, and held tryouts. There is no substitute for gut instinct. There was the overnight aide we had to send home at 4 a.m. because she was too rough with my mom, and quite frankly, creepy. There was the live-in we interviewed who was a sweet Southern belle from my mom’s hometown and seemed too good to be true.

We would later find out she was. The sad fact is that elder sisters and certified CNAs are woefully underpaid for the tasks they perform. Some days, I felt like I was running a fast food joint staffed by teenagers as I got call after call with excuses of “My car won’t start,” “I don’t have money for gas,” and “My kid is sick, so I can’t work today.” We ultimately went through an agency, paid a higher rate, and found somewhat more reliable aides. The lesson here: Good aides are hard to find. If you find one, do everything possible to keep him/her happy. We currently have two sitters for my mom, who have since become like family to us.

Read more: A Guide to Caring for Elderly Parents

Seek Financial Guidance for Senior Care and Living Expenses

Photo credit: Andrea Piacquadio

I’m fortunate that one of my brothers is in the financial industry. But, if you’re not that lucky, I highly recommend you find someone who knows the senior care market. Just as a point of reference, we had my mom’s care based on her finances figured out to the month (roughly 84 of them). We went through about 30 of those months in the first 12.

First, you’ll need to know and understand what Medicare does and does not cover;  for example, it does not cover home health aides, who assist with daily acvtivities like bathing, eating, moving, and grooming. These individuals also check vital signs and keep track of the care recipient’s overall physical and mental health (i.e. how often they go to the bathroom, what their mood is like, if they are eating or drinking enough, and so on). 

Long-term care policies (my mother’s saved us, quite frankly) often have a waiting period; we endured unplanned out-of-pocket expenses for the first 90 days of my mom’s care. If a parent was a veteran, they or their spouse may be entitled to a monthly stipend. I spent weeks trying to track down my dad’s documents only to find that he did not qualify based on his dates of service.

The bottom line? The two pieces of advice I can offer as a caregiver for an elderly parent: 1) sit down with your parent before they become ill and understand these financial resources and know where the actual documents are — or better yet, hire an elder attorney to help you with it all, and 2) plan for more expenses. We didn’t anticipate needing sitters for my mom but our/her needs changed; they generally run between $12 to $15 per hour, so you do the math.

Read more: Long-Term Care Policies, Explained

Know When to Ask for (More) Help

Photo credit: Pixabay

As I recounted in my previous post, my brothers and sister-in-law and I took turns sleeping on her floor and taking care of her in those early days. We cared for her 24/7. But as her needs increased (two-person assist will become part of your vocabulary as will lots of potty talk) and our need for sleep and respite increased, we hired aides. But, after numerous hospitals stays and continued cognitive declines, we knew we were out of our league. We made the difficult decision to take that next step and look at assisted living facilities. Truth be told, I lay awake many nights and question whether this was the right decision.

Choosing An Assisted Living Facility 

Photo credit: Pixabay

I think this step of the journey — which was the most difficult — is akin to that of finding the perfect wedding gown. You just know. And in both of these cases, for me, it was the first one. In those initial days, we were filled with distrust. I was leaving my mother, who is unable to communicate, in the hands of strangers. It’s much like dropping your baby off at that new day care (remember that birth in reverse analogy I started with). We were the squeakiest wheel for which no amount of WD40 could silence. In fact, in our first week, the new primary care doctor we engaged fired us. Yes! He fired us! He felt we were asking too many questions, especially about new medications he was prescribing. We frequently made requests of the staff as she (and we) tried to adjust to her new “home.” She likes her coffee this way. She is hypersensitive to noise and activity so she needs quiet alone time. She gets uncomfortable in her wheelchair so her legs need to be propped up just so. Her room was covered with sticky note reminders and lists. We knew we were annoying the staff, but my mother had no voice — so we had to be hers. There are amazing aides at her facility and there are mediocre aides. And clearly, there are a few who certainly don’t want to be there. But I would say that the majority of them are incredibly passionate about what they do and when they don’t know I’m looking, I see them steal kisses and gently brush a resident’s hair. But the stark reality is, in assisted living facilities, time and attention are a commodity. Many of these aides have seven or more patients. It’s difficult for them to give one on one attention for feeding, calming, or just offering companionship, which is why we have sitters.

Read more: 6 Factors to Consider When Choosing an Assisted Living Facility

What You Need to Know About Hospice

Photo credit: Joshua Hoehne

This is one of those tips I learned from a friend who was parenting a parent. Hospice has proven to be an invaluable resource for us. Since my mother is wheelchair bound, taking her out to see a doctor was a nonstarter. Most assisted living facilities have doctors who come visit patients. Ours did, but remember, he fired us. I found other medical services and physicians that offer housecalls for a premium rate (worth exploring). But, as the caregiver for my mother, I learned that hospice provides a full medical team, and many other services, to those who qualify. Being certified for hospice generally means you have six months or less to live but some patients actually improve after receiving hospice care (my mother did due to the quality and continuity) so they’re able to get re-certified. My mother has a nurse who visits her one to two times weekly, an aide who bathes her daily, a massage therapist, and a chaplain. As my mom’s caregiver, having access to these services, not to mention the incredibly caring spirit of the people and organization, has given us incredible peace of mind. You should know that Medicare will only cover hospice and will not cover any other care. So, we had to stop physical therapy (she wasn’t making progress anyway). We could no longer see her doctors at Mayo Clinic (unless we private paid which we did a few times just to get a second opinion — that’s that cha-ching I mentioned earlier).

Consider Medical Marijuana and CBD Oil 

Photo credit: CBD Infos

My mother’s aneurysm left her with a brain injury. So, it causes some behaviors and symptoms we’ve really never been able to find an answer for. She’s been on multiple medications to manage these symptoms and, as I’m sure you can guess, most have side effects — including sedation. But, we didn’t want my mom sedated. We wanted her to be awake and able to interact with us in her own way (many people ask, and yes, she knows who we are as she does not have classic dementia). Her dosages of meds continued to increase to control her (increasing) agitation and restlessness. With that came more sleeping, less eating, fewer interactions. So, we began experimenting with cannabis. The first day we gave her a dose of CBD oil, within 30 minutes, her entire demeanor changed. And soon it gave way to smiles. And laughter. And giggling. And yes, the munchies. We’ve tried oils (dripped into her mouth) and patches. We recently discontinued all of the synthetic medications and replaced them with cannabis. If you’re lucky enough to live in a state where medical marijuana is legal, find a doctor who can prescribe it and at least try it. Some assisted living facilities will administer it if prescribed by a doctor. Cannabis is simply an essential oil — just like the lavender oil they diffuse in hospitals. You can choose from non-psychoactive CBD and psychoactive THC. We’ve found that a combination of both work best for my mom.

Try Not to Feel Guilty

Photo credit: Brett Sayles

Sometimes, when I’m sitting home drinking a glass of wine or driving by the beach, I feel these pangs of guilt that my mom can’t do these things anymore. I’m sad that I can’t take her to a spa and treat her to a facial — one of our regular mother-daughter indulgences. She’ll never do many of the things she always enjoyed. I’d like to be able to offer the advice, “Don’t feel guilty,” but I can’t. It’s horrible that she’s living in a cell-like tiny room and her only escape is when someone wheels her outside for some fresh air. She’ll never see the beach again. She’ll never visit another spa. But we’re there for her virtually every day and we now relish the little things, like her recognition of “The Andy Griffith Show” opening music. Or seeing something in her brain click when I make her one of her favorite southern casseroles and she takes that first bite. Or when she laughs as my brother talks about how dirty her house is and that her dog needs a haircut. We now cherish the little reactions as we create new memories. Not memories of places, but memories of us.

It’s taken me a long time to write this post. I generally write about happy things – mainly my happy places. But writing is therapy for me. So as difficult as this is, my mother’s story needs to be told.

Often, when I’m writing a blog post, I talk into a recorder and tell a story – it sounds more conversational which is my style of writing. But in this case, I couldn’t do it. My voice kept breaking and Siri couldn’t interpret my words riddled with tears.

And true to the name of this blog, MomUncorked, I’m writing this post after a glass (or three) of wine, as wine is my muse and helps me tell my stories.

So here we go (deep breath)…

Imagine walking out your front door one day and unknowingly never being able to walk through that door and go home again. Never seeing your dog again. Never sleeping in your own bed. Never sitting in your backyard sipping a glass of wine.

This is what haunts me at night (when I let it)…

On November 3, 2017, my mom and I went shopping. We bought her new shoes, new pants, and had lunch at Nordstrom where she discovered her new favorite salad and exclaimed, “Let’s come back here tomorrow.”  It was the perfect mother-daughter day. Less than 24 hours later, she was laying in a hospital and I didn’t know if she would live.

I had come from my home in California for a one week visit, when she came into my room early that Saturday morning and said, “Something’s wrong. I have the worst headache of my life.”

I knew those words. And I knew what they meant. I texted my brother who lives a mile away and he responded, “I’m on my way.”  We rushed to the hospital and within 90 minutes, I sat outside the CT scan room as the doctor said to me, “She’s got a brain bleed. We need to get her downtown.” Thirty minutes later, I was in the back of an ambulance with her making the trip downtown where they were more equipped to deal with…a brain aneurysm (the result of a new medication she was prescribed, but that’s another post).

The hardest thing in those first 120 minutes was seeing my mom go from being lucid and aware, and scared, to incoherent and unresponsive. I think back often to that exact moment, when I saw that change. That’s when life as I knew it changed.

Let me backtrack. My family is affectionately known by our friends as “The Cleavers.” We’re one of those ridiculously close, incredibly supportive families, primarily because we were pulled together by the gut-wrenching death of my father at just 56 years of age. The day he died (when my mother was the age I am today, 54), my brothers committed to take care of my mom for the rest of her life. And as you’ll see, they’ve certainly gone above and beyond the role of sons.

My oldest brother had taken his annual sabbatical to Yellowstone, his happy place, to R&R and indulge in his hobby for amateur photography. Imagine having to make that phone call to tell him what happened. Fortunately for him, he was in a remote area so by the time we reached him, my mom had stabilized. But he was on the next flight home.

The ICU vigil was in full swing (sadly, we had been down this road before with my father). Panera became our best friend as I, my brothers and my sister-in-law, took turns sleeping on the awful plastic sofa next to her bed. There was NO WAY we were leaving her bedside at that point. We wanted to talk to every doctor, every resident, every nurse who entered her room. And so began…the journal.  A notebook where we kept detailed, overly detailed, notes for the next 90+ days. What medications she had, what the doctors said, what tests were administered and their results, and ultimately, what she ate, and funny enough, we documented her bodily functions. It’s as if we wanted to solve the puzzle and put her back together.

Ten horrible, sleepless days and nights on that ICU rollercoaster. I had so much powdered Sanka from the “family lounge” that I almost gave up coffee. And having a Chick-fil-A right in the hospital proved to be a bad thing. Can you say “stress eating”?  But between the four of us, there was no wavering. We were a fortress in supporting each other and her recovery. I can’t even begin to explain how we pulled together as a family. There were morning Starbucks runs, mid-day Panera runs (often more than one a day) and, yes, late night wine runs. You do what you can to stay sane.

Ten days in ICU led to 30 days at a rehab facility. Remember that I left home for a one week visit with a carry-on suitcase. Shout out to Target for my new wardrobe.

Fast forward…rehab (for her, not me) was great. She progressed. She was able to somewhat feed herself and was able to stand, with assistance. We thought we were on the way to recovery. I distinctly remember telling people, “Oh yeah, the doctors expect her to make close to a full recovery.” We hung our hope on the doctors’ use of the word “could.”

Here’s the funny thing about a brain injury complicated by cognitive impairment. The part of her brain that says, “I need to get up and go to the bathroom,” is still intact, yet the part of her brain that tells her legs how to walk isn’t. So she tries to stand up. Often. This is the woman who had two knee replacements and couldn’t sit still to heal because she had things to do – things that usually involved cleaning the house or cooking. That’s my mom. She never sat (sits) still.

Once she entered the rehab hospital, we knew we needed a break. None of us was getting a full night sleep. Terrified of a fall, we hired private nurses to stay with her at night, and we continued to rotate shifts among the four of us during the day. For 30 more days. Sidebar: I love to sleep. I mean I REALLY love to sleep. I had no idea until this happened how little sleep I can actually get by on. I remember 90 days after her aneurysm saying, “I just want to go to sleep one night without worrying.” (As we approach 120 days on this journey, I’m still waiting for that night.) My brothers essentially put their jobs on hold as we all put our lives on hold. At this point, we were in the Christmas season – it was anything but merry.

I would be remiss if I didn’t talk about my brothers and my sister-in-law and how we pulled together like I believe no other family ever has, to take care of my mother, and each other.

You honestly have no idea! We pulled 24/7 shifts, alternating sleeping on a mattress on her floor once she came home from rehab, to staying with her during the day and tending to her daily needs. I’ll spare you the details, but my brothers, without hesitation, took on new roles as caregivers, dressing her, bathing her and so much more. Again, it falls into the category of “things I never thought I’d talk to my brothers about.” I’m in awe of how my brothers have put aside any modesty and their own phobias to take care of my mom. And my sister-in-law, who has cared for my mother as if she was her own. I found a photo on my phone yesterday of my SIL in those early ICU days washing my mom’s face and it’s so bittersweet. I have truly learned the meaning of selfless. And patience.

Fast forward again to where we are today, almost 120 days post-aneurysm. She’s now living in a memory care facility where she can get full-time and intensive specialized care and therapy. We still hold out hope that she’ll be able to come home one day.

One thing I’ve learned: if you can’t find humor in such sad situations, you’re doomed. Our motto was: “If you don’t laugh, you’ll cry.” My tentative book in progress is titled “Have you seen my mother naked?”, because, well, you know. If you could only see our 90+-day long text string about tending to my mother’s daily, and often, rather personal, needs.

I mentioned the beloved “journal” that filled a notebook for 100 days with every possible detail about her recovery, or lack thereof. But what I really cherish is our group text chain. At last count, we were at well over 1,000 text messages. Some serious, some downright depressing, but some that are also hysterical and will give you a glimpse into how we were able to make each other laugh – our coping mechanism.

These are actual unedited texts:

From my brother at the hospital: “One thing I forgot to share. The ER dr came by before mom went up to a private room. She was asking mom if she knew the month, date or day of the week etc. of course mom couldn’t answer any of her questions. So the dr points to her own eyeglasses and says to mom ” what are these on my face?” Mom looks at her face and then thinks for a second and replies “wrinkles?”

Text from my brother at the hospital: “Reporting from the front lines: metropropol and Xanax deployed in banana pudding.”

Text from my brother at the hospital: “She hated the pull ups because they are uncomfortable. Not sure what to do. Girls?”

Text from my brother at rehab: “After therapy I took Mom to breakfast and left her.  Went back in 20 mins to get her. The other 3 people had left. Mom was cleaning up the dishes everyone left on table. Had scraps from table on one plate and had stacked empty plates and bowls all together.”

Me texting to my brother who is with her at hospital: “Have a conversation with her nerves. This is not their first rodeo. I’m quite sure they have experiences with other patients on a regular basis and perhaps could give us some suggestions or advice on what to do during the downtime.”
(pause)
Me: “Nurses. Not nerves.”
Brother: “Oh man! I just had a long talk with her nerves.”

Brother texting from hospital: “She keeps talking about a girl who came to do something at her house today? Not the maid. Something else? It was a girl who she saw today who put something somewhere “in the “”””.  This is like a really hard crossword!”

And there were moments of lucidity:

Brother at rehab: “Some volunteer just brought Mom a magazine. It is US weekly and the lead story is about the Kardashians. I asked Mom if she wanted me to read her a story about the Kardashian’s.  She looked at me with a sour face and said ‘please don’t.”

There are hundreds, almost a thousand, more. Some funny. Many sad.

There are no real lessons here, except to take nothing for granted. One day we were out shopping. The next day she was fighting for her life. 

As we approach that 120th day, the doctors have said we have to give this type of injury at least six months. Just when we think we’ve hit a plateau, she’ll surprise us and have an incredibly lucid day. We know she’s still in there. So we hold onto hope.