Death is birth in reverse. That’s what the hospice nurse kept telling me every time I questioned a new behavior of my mom. Every time I found myself in the baby aisle at Target buying diapers, sippy cups, and picture books, I realized just how right she was when I was a caregiver for my elderly mother. Caring for an elderly parent is hard, especially if you’re planning on taking care of elderly parents at home. I hope my experience offers some guidance and advice for others who find themselves in this difficult situation.
What to know about caring for an elderly parent
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 acquired an inordinate amount of information and family caregiving resources. And, the reality is that many of us have (or will) experienced this same task of caring for an elderly 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 gained after caring for my elderly mother.
A few years ago, my mother suffered 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 continued for almost four years before she sadly passed away.
How to advocate for elderly parents
I encountered numerous health professionals who told me how my mom should act, feel, behave, and respond in her recovery. But in my experience in elderly parent care, I couldn’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 were tasked with taking care of her, but no one knew my mom better than I did. I’m the one who could tell when she got a UTI simply by her behavior (my mother could not speak or gesture due to aphasia). I knew she cried in the shower because she was cold. I knew she disn’t like to sleep with socks on. Above and beyond, I knew her better than anyone, so I would not stop advocating for my elderly mother. If you’re caring for an elderly parent, make sure you are their voice!
What is Aphasia?
According to the National Aphasia Association, “Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is always due to injury to the brain-most commonly from a stroke…Aphasia can be so severe as to make communication with the patient almost impossible, or it can be very mild. It may affect mainly a single aspect of language use, such as the ability to retrieve the names of objects, or the ability to put words together into sentences, or the ability to read.”
How to find caregivers for elderly parents
Initially, we took my mother home, thinking we could care best for her on our own. But as I said, taking care of elderly parents at home is really really hard. I planned to be my mother’s caregiver but 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 sitters 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.” Elderly parent care is hard! 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 had two sitters for my mom, who became like family to us.
The cost of assisted living and the cost of caregiving for elderly parents
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 thanks to unanticipated expenses.
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 activities 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.
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.
How to Choose An Assisted Living Facility for your Parents
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 were incredibly passionate about what they do and when they didn’t know I was looking, I saw 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 the 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 had private sitters.
What You Need to Know About Hospice Care for an Elderly Parent
This is one of those tips I learned from a friend who was parenting a parent. Hospice proved to be an invaluable resource for us. Since my mother was 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 offered 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 were able to get her re-certified. My mother had a nurse who visited her one to two times weekly, an aide who bathed 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, gave 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).
Try Not to Feel Guilty
Sometimes, when I was sitting home drinking a glass of wine or driving by the beach, I felt these pangs of guilt that my mom couldn’t do those things anymore. I waws sad that I couldn’t take her to a spa and treat her to a facial — one of our regular mother-daughter indulgences. She’d never do many of the things she had always enjoyed. I’d like to be able to offer the advice, “Don’t feel guilty,” but I can’t. It was horrible that she was living in a cell-like tiny room and her only escape was when someone wheeled her outside for some fresh air. She’d never see the beach again. She’d never visit another spa. But we were there for her virtually every day and relished the little things, like her recognition of “The Andy Griffith Show” opening music. Or seeing something in her brain click when I made her one of her favorite southern casseroles and she took that first bite. Or when she laughed as my brother talked about how dirty her house was and that her dog needed a haircut. We cherished the little reactions as we created new memories. Not memories of places, but memories of us.