Thursday, November 17, 2011

Checking In When You're Mentally Checked Out (November 2010)

My entire life I promised My Mom she would never have to go to a nursing home. She despised them, mostly because of the smell. I do too, so it wasn't a big deal to pledge to help her avoid one at all cost. As with most things in life, there's always an exception to the rule. We've run into ours. My Mom needs to recover from a broken hip, you have to climb a flight of stairs to enter my condo. The only answer is a short stay at a glorified nursing home, called a "rehab facility." As I wrote when she was still in the hospital, we're thinking if she's losing her mental faculties, she should at least cling to her physical strength. We did our research and picked the best place in town. Nonetheless, I knew the minute she saw the set up she'd break down. It would take a pretty good sales job to convince her to stay. For starters, I knew she needed to be in a good mood when we arrived.
Release from the hospital came on a glorious fall afternoon. Rather than using an ambulance, I was permitted to transport her in my own car. Our friend and caregiver Tasha came along to assist.
"She's out of 'jail' for a while, let's have some fun on the way over," I said. The hospital staff alerted the new facility that we were on our way and to expect our arrival. Instead of following orders, we veered off course and swung by the cider mill. Tasha and My Mom enjoyed the last of the fall colors from the car while I ran in for cider and donuts. We made a big deal out of creating a mini picnic for her in the passenger's seat. We were off to a good start on the fun front.
For the remainder of the drive to the facility we sang My Mom's favorite songs, continuing to lift the mood. As we pulled to the back of the building we were greeted by a giant statue of Jesus, almost cartoon looking in his robust shape, his arms reaching out as if to greet us. My Mom stretched her arms out and launched into a loud and lively chorus of "Jesus loves me this I know, cause the Bible tells me so!" Tasha and I joined in. The staff that brought the wheelchair to the passenger door probably thought we stopped at a bar on the way over. I whispered that we were just trying to keep the mood light and the two aides now also joined in as we wheeled through the back lobby, onto to the elevator and all the way to her new room on the second floor.
The tactic worked. My Mom loved her new room and was particularly elated when she discovered the Jesus statue in view right outside her window. This discovery led her to launch back into the song again. She was happy. What a relief.
I didn't mind the place either. The staff seemed friendly, the amenities were nice and there was no foul odor. We were off to a good start, until the admissions clerk entered the room.
It's not that she was mean or anything, I just wonder how well she understood older people, particularly one that we've made very clear is in the advanced stages of dementia.
"Do you know why you're here?" she asked My Mom, her clip board and pen ready to record answers.
"She broke her hip," I jumped in.
"We prefer to speak directly to the patient," she said. I tried once more to explain that My Mom wasn't really capable, but then decided I liked the idea of treating her with dignity. I'd back off.
"So, Wyn," the woman got back on track, "I was asking why you are here."
"Because Jesus loves me," My Mom answered boldly. Tasha and I stifled laughs. Unphased, the woman continued.
"I see. I'm wondering if you know why you were sent to this facility."
"Because the Bible told me so." A few giggles escaped, but we tried to hold it together. The woman asked a few more questions. A few, like birth place and birth date, My Mom actually got right. Then she asked a doozy: "Who in life do you most admire?" she asked.
"My mother," My Mom answered without a pause.
"What do you remember about her?"
"Well, she's about yay big," My Mom said indicating the size of a gallon milk jug with her frail hands. That was it, Tasha and I both burst out laughing. I thought I was going to fall off the little twin bed.
The admission process proved thoroughly entertaining. Sadly, it should have been a warning sign. Although the "rehab facility" advertised being equipped to handle all phases of caregiving including memory care, they proved inept at dealing with My Mom's mental state and even worse at rehabilitation. It's not entirely the fault of the facility or the staff -- it's mostly the bureaucracy. My Mom was at the facility to regain strength, but due to fall risk (insurance), she was forced to sit in wheel chair for safety. She wasn't even allowed to walk with my assistance, only a member of the physical therapy team and that was only a half hour 5 days a week. It was a losing battle. I was vocal about the flaws in the system and we were politely told that My Mom could not be helped because of her mental condition -- yes, at a place that has memory care. They knew we were good advocates for our patient and that was bad news for them. We were politely asked to leave. Tragically, the system ruined My Mom in the process.
The woman that walked the hospital halls with a walker the day after her minor hip surgery, sang brilliantly as she walked through the front door of rehab, ate well and worked hard during physical therapy sessions, now has crippling back pain (from a flimsy wheel chair) and no leg strength after 10 days of supposed rehab. We had been so excited for this opportunity for My Mom to regain physical strength to compensate for her mental disabilities and now both had diminished under professional care.

Where Have I Been? Exhaustion or Excuses?

Where has the past year gone?! I have all sorts of stories yet to tell, but I haven't had the energy or inclination to write them. They're written in my mind, I just couldn't put them on paper.
A lot has happened in 12 months. Mostly decline.
After two trips to the hospital, then a deplorable stay at a quote "rehab" facility -- My Mom became too weak to remain in my care. I've said since the beginning of this experience that I'd know when it was time to make a transition. I was right. I had no guilt and no remorse when she went to a private care home instead of back to my place last November.
What I didn't expect is how long it would take to recover from the exhaustion of caregiving.
It's been a full year since we made the move and I'm just starting to feel like myself again. I've got other excuses about why I haven't had time to journal my experiences. I've been busy finding work again, catching up on my social life and riding my horse a little more often (without worrying about My Mom escaping from the car!) I've also been trying to figure out how to find balance and make time for "visits" to the new home where I attempt to continue to spend quality time with My Mom.
But mostly, honestly, I think I have just been recovering from exhaustion. Two and half years of sleepless nights, the growing job of helping My Mom through daily activities, and the final duties of round the clock nursing really took a physical toll. More than I was willing to admit while I was still the main provider.
This week for a moment I thought the whole experience was coming to an end. My Mom is now pretty much wheel chair bound, and she's becoming increasingly unresponsive. Luckily, she's super content. Unlike most Alzheimer's patients, she still eats voraciously and she doesn't appear to be in any pain. Even when she's completely out of it, her hands and feet keep time with the music therapist who comes weekly to sing and play the guitar. Until this week the decline had been gradual, but Tuesday night My Mom took a dramatic shift for the worse. It turned out to be a bit of a false alarm. A 'bad day' as we call it when people age. But the episode made me confront the inevitable. She's definitely in the final stages of this horrid disease. I can't stand to watch her grow crumbly when there's nothing I can do about it. I think back to her vigor just a year ago and my exhaustion evaporates.
The truth is the time we had together wasn't nearly long enough.