What I wish everyone knew about caring for a dying parent
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.
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 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 resources from this experience. 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 my wisdom.
I know her best
I have encountered numerous health professionals telling me how my mom should act, feel, behave and respond. And I can’t help but think to myself, “I have known my mom for 55 years – you’ve known her for six months.” 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 can not 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 being her advocate and her voice.
Initially, we took my mother home thinking we could care best for her on our own. 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 CNAs and eldersitters. 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 4am 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 eldersitters 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 become like family to us.
Get financial guidance
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 eldercare 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. You’ll need to understand what Medicare covers and more importantly, what it doesn’t. (It does not cover home health aides.) 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, two pieces of advice: 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 $12-15 hour so you do the math.
Know when to say “uncle”
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 ALF
I think this step of the journey 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. This was probably the most difficult step of the journey. 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 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 ALFs, time and attention are a commodity. Many of these aides have 7 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).
The miracle of hospice
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 ALFs 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 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. 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) and 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).
Cannabis is not your high school high
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. And with that, came more sleeping, less eating, less interaction. So we began experimenting with cannabis. The first day we gave her a dose of the 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 ALFs are onboard and will administer it if prescribed by a doctor. Cannabis is simply an essential oil – just like 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.
Don’t feel guilty
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.