As we prepared to bring her home from the hospital, planning to ride out those six months to get our mom back, we reconfigured her home for our new normal. We converted the kitchen pantry to a bathroom that could accommodate her walker and unpredictable gait. We installed raised toilet seats with handrails and grab bars in her shower. We lowered her bed to the floor because she still tried to get up every night. We purchased a motorized recliner that would help lower her body so she could sit.
We stocked up on her favorite foods and feeding utensils to continue her efforts from occupational therapy. My mother had this adorable habit of waking up and needing to eat in the middle of the night. She often kept packs of crackers, a half of a peanut butter and jelly sandwich, and a protein bar on her nightstand. My brother once found a half PBJ sandwich in her cosmetics bag in the bathroom. A sign of her growing older but hysterical nonetheless. So we stocked a basket next to her bed with snacks, in case she got hungry during the night.
And so it began. Our new sleepover schedule as me, my brothers and my sister-in-law took turns sleeping on an air mattress next to her bed. We all slept with one eye open most of the night, waiting to hear her jostling to get out of bed to pee. We’d help her onto her bedside toilet and then gently back into bed again.
After one particularly bad night, I woke up to find my mom had diarrhea during the night. I was completely unprepared for this. This was not in my caregiver playbook. I had helped her wipe herself but she usually did the ‘dirty’ work. Oddly enough, the notion of dropping toilet paper into the toilet was lost in her brain. We spent countless days teaching her, “Drop it!”, “Let it go!”, to no avail. We even asked her PT to teach her this. It never worked.
So as I awoke to find this heinous mess in her bed, I got her up, put her in her shower and began to clean her. I was exasperated, embarrassed for her, mad, exhausted, and frustrated. My brother called about that time and I lost it. I must have struck a chord with him because he called back 30 minutes later and told me he had booked a massage for me at a nearby spa. I think it was more of his “glad it was you and not me” reaction.
This episode was my first inkling that we may not be prepared for the road ahead of us.
We began exploring the possibility of live-in care. Jeff, a financial manager, did the math. Yes, we could afford it. I placed ads and conducted interviews. After a few candidates, the one that was “too good to be true” appeared. She was from Georgia, just like my mom, and had that sweet Southern personality that seemed like the perfect match. We bought her a bus ticket (she did not have a car) and invited her down for an overnight visit.
One thing I’ve learned throughout this entire ordeal is to trust your instincts. Go with your gut. My gut immediately told me that something did not feel right about this sweet older woman. To this day, I can’t pinpoint it but as desperately as we wanted to find someone to alleviate our burden as caregivers, she was not it. I wondered how to interview caregivers.
So I began interviewing CNAs to put together a rotating, full-time schedule. For weeks, I was consumed with resumes, references, and background checks. I finally found a team and my role as daughter/caregiver shifted to that of a HR manager. But I suddenly found that I was not managing young, trained adults. I was managing what felt like irresponsible teenagers. “My car won’t start; I can’t come today.” “My kid is sick; I can’t come today.” “I don’t have money for gas; I can’t come today.” And then there was the aide my brother had to dismiss at 2am because he witnessed her manhandling my mom during a toileting episode. Clearly, I did not know how to interview caregivers.
We were back to square one. But not so fast. One day, my mom began acting very erratically. We had become accustomed to dealing with her sundowners – yes, she even experienced this at her own home – but this was daytime and she became violent, kicking and screaming at us. At a loss, we took her to the ER. This would become our weekly routine. She had chronic UTIs that continually set us back in our caregiving efforts and her back in her rehabilitation efforts. They were severe. One would keep her in the hospital for an entire week, and every time she was released, we would have to start all over again with learning to walk, toilet and feed. And in managing sundowning which became more and more intense with each hospital stay. It was a vicious cycle.
As we attempted to return to some form of normalcy, Jeff was hosting a birthday dinner for Candy at a local restaurant. It was our first real social outing since this whole nightmare began. My mother was back in the hospital and just as I downed my first glass of wine, the call came. My mother was sundowning. Bad. And the sitter we had hired to stay with her was unable to manage her. I’m not sure she had ever seen this level of agitation and delirium. She asked if I could come. So my brother loaded me into an Uber, with a large ‘to go’ glass of wine and sent me off. I would sleep on the chair next to her in my party clothes because I could soothe her like no one else. I found that infusing lavender oil and brushing her hair and talking her through it seemed to calm her. I taught her my yoga breathing and tried to get her to a place of meditation. I had worked with her on this over the years to calm her lifelong anxiety so she was familiar enough with the process that it seemed to work, even on her broken brain.
All this time, we’re still asking doctors for some sort of prognosis, but they kept reminding us of that 6-month milestone.
She would spend a total of 50 days in the hospital within those first 90 days following her brain injury.
It was that last hospital stay, a raging UTI, that convinced us it was time to make a change. It seemed as though we were making weekly trips to the hospital and each time, her ability to walk, toilet, or feed herself was declining. At home, we couldn’t offer the same level of intensive therapy she was getting in rehab. Having a therapist come to the house (inconsistently) three times a week was just not helping her progress. In fact, she was regressing significantly. And the sundowning was getting very difficult to manage and was taking its toll on us emotionally and physically.
I don’t think we, my brothers and I, or anyone for that matter, can be prepared for the disruption to daily lives such a sudden illness can cause. I had finally worked my way into my dream job of being a travel writer. I’m not sure where I got the travel bug, maybe it was from a life of moving around so often as an adolescent, or maybe it’s just my sense of adventure. I’m spontaneous, impulsive, and always need something to look forward to.
I was just getting on the A list of PR firms who invite travel writers to great destinations when her stroke occurred. I was jetting off to the Middle East one month, the South Pacific the next. My sense of wanderlust was overflowing. But her illness abruptly grounded me. I could not imagine being off in another country, or another continent for that matter, and having her condition decline and not being able to get to her quickly. So I curtailed my travels. Jeff and Candy did as well, also being avid adventure travelers.
As the days at home with her became increasingly difficult to manage, I knew what we needed to do but was terrified to bring the issue up with my brothers. I felt like it was time to move her to a long-term care facility where she would have round-the-clock, better care. This is one of the hardest decisions a family will ever make. I struggled with the feelings that I was giving up on her, that I was putting her away. And again, this is one of those things I think you can only understand when you live it, but it was selfishly time for me to admit that I needed to live my life too. I had not seen my husband for three months.
So one evening, while sitting around with my brothers, I decided to broach the subject. “I think it’s time for us to look at assisted living.” Steve, who had been her primary caregiver and companion, was adamantly opposed. Jeff, was a bit more open minded. So the next day, I began making phone calls and Candy and I began making visits. To put it lightly, I guess this is kind of like trying on wedding gowns. You just know when it’s the right one. Much like my wedding gown experience, I picked the first one. It just felt like where she belonged.
She was still in the hospital at this point and when we went to visit that afternoon, the doctors informed us that they were going to release her. There really wasn’t much more they could do for her in the hospital and naturally, Medicare played a role in the need to discharge her. We panicked. We did not want to take her back to her house because at this point, she could no longer get herself out of bed to toilet, she could not walk, and we did not have proper care lined up. We pleaded with the doctors to give us 48 hours so we could make arrangements with the ALF to move her in. Gratefully, everyone cooperated understanding our desperation and it looked like it was going to be a seamless transition.
How to interview caregivers
Basics of long-term care insurance (it saved us! My husband and I bought it after this experience)
Choosing an assisted living facility, more
Financial planning for assisted living
Medicare vs. Medicaid facilities
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