Archive | June 2014

No Filter

My mom is the sweetest person, but dementia has damaged her “filters” and she’s not as tactful as she used to be. She pretty much just says whatever comes into her head. Two recent comments she made to me:

“I like your outfit.” (Thanks, Mom.) “It doesn’t hide the belly, though.” (Ouch.)

“What’s that on your arm?” (It’s a mole. I’ve had it forever.) “Well, why don’t you get it removed? It’s ugly.”

Maybe this is payback for the time I walked up behind her sitting on our back steps when I was a kid, looked down at the top of her head and said “Eww, Mom! Did you know your hair is all gray on top?” Heh.

Today we were having dinner in a local diner and a woman walked in. She was probably around 70 with peroxide blonde hair, makeup a la Tammy Faye Baker, and wearing a very short and very tight skirt. Mom laughed out loud, rolled her eyes, and commented on the woman’s short skirt several times. For once, I was grateful for her new habit of talking so softly that you can hardly hear her.

Belated Birthday Post

My mom turned 86 on June 9, or June 10, depending on who you ask. Growing up, she celebrated on June 9, which was the day her parents told her she was born. At age 16, she got a copy of her birth certificate so that she could apply for a social security card and a part time job… and the birth certificate said June 10. Her mother maintained that the doctor had written it down wrong and June 9 was her real birthday, so that’s the day she celebrates. But we’ve always had to remember to say “June 10, 1928” when asked for anything official.

So, on Monday, June 9 I picked up a strawberry swirl cheesecake that she could share with all the ladies at the house and brought it over after dinner, along with a card. We put a candle on her piece and all sang Happy Birthday to her. Mom sang along, singing “Happy birthday to me” and gesturing toward herself every time she said got to “me” or her name in the song. I can’t remember the last time I saw her be silly like that. I explained that her gift would come later because my siblings and I were all going in together on something special and we haven’t quite got it figured out yet. She said that was fine, that having everything on the actual birthday only matters when you’re a kid.

Here’s Mom and me in a birthday selfie.

Birthday Selfie

The owner of the facility brought over Happy Birthday balloons in the morning on June 9. At my request, so that my cheesecake wouldn’t seem like an afterthought, she saved their little party for Mom’s birthday until the 10th. They had a special lunch (spaghetti and meatballs) with a birthday cake and candles and sang to her again.

Make A Wish

I felt a little badly that our celebration together was so… small. In the past, I would have suggested taking her out to a nice restaurant or something. But we go out to eat once or twice a week, so another trip to the local diner didn’t seem like anything special – and I can’t take her to a fancy place now, not when you never know when she’s going to pop out her dentures at the table or display some other odd behavior.  I wish I could even bring her to my apartment for a homemade meal. That was one of the things that I’d especially looked forward to doing once she lived close by. But she couldn’t manage the seven steps into my apartment building now, so unless/until I move to a place without stairs that’s not gonna happen.

Today I picked her up in the late afternoon for a follow-up appointment with the pulmonologist, who said that her lungs sounded great and agreed that there is no further need for oxygen. He wrote that on a prescription pad, so I can send back all the home oxygen equipment we’ve been paying to rent since April. Yay!

At the doctor’s office, she asked what day it was. When I told her, she said “I missed my birthday.”

“No, you didn’t,” I said. “We had cheesecake and sang Happy Birthday to you.”

She shook her head, impatient with herself for not remembering. “Who was there?”

“Just me and the ladies that you live with. The next day at lunch time, the ladies at the house had another birthday cake for you – but I wasn’t there for that because I had to work.”

She started telling the nurse the story of why she has two birthdays, and nothing more was said about it. But I realized it was silly of me to regret not doing more. She wouldn’t have remembered it anyway.

Diagnosis: NPH

No, not Neil Patrick Harris… Normal Pressure Hydrocephalus. I’d never heard of it until Thursday, when Mom finally had her follow-up with the neurologist.

In layman’s terms, what it means is that Mom has an excess of cerebrospinal fluid in the ventricles of the brain, which causes the ventricles to enlarge and press on different parts of the brain. The most common symptoms are balance/gait issues, mental confusion (dementia), and urinary (and occasionally bowel) incontinence. Check, check, check. Dr. O said that the CT scan is not definitive on this, but that since the ventricles do appear enlarged on the scan and Mom has all the classic symptoms, it is by far the most likely cause. And check out this more detailed list of symptoms I found on WebMD.

Symptoms  include:

  • Memory loss
  • Speech problems
  • Apathy (indifference) and withdrawal
  • Changes in behavior or mood
  • Difficulties with reasoning, paying attention, or judgment
  • Walking problems
  • Unsteadiness
  • Leg weakness
  • Sudden falls
  • Shuffling steps
  • Difficulty taking the first step, as if feet were stuck to the floor
  • “Getting stuck” or “freezing” while walking

My mom has had every. single. one of these symptoms over the past year.

Unlike Parkinson’s Disease or Alzheimer’s, there is a treatment for NPH that can sometimes reverse most of the symptoms. But it is very invasive. A neurosurgeon drills a tiny hole in the skull and puts a shunt into the ventricles to drain the excess fluid to another part of the body. The success rate is highest for patients who are only exhibiting the gait disturbances and have little to  no dementia or incontinence. Dr. O said that many neurosurgeons may refuse to do the procedure on someone with my mom’s health issues and advanced dementia. Understandably, I think. If my mom were a decade younger and this procedure had a chance at reversing her symptoms and giving her another 10-15 years of a normal life, it would be worth exploring. But at this point in the game, I think the risks of anesthesia outweigh the possible benefits.

I left the neurology office with my head spinning, wishing with all my heart that my dad (a former anesthesiologist) was still alive to counsel us on what to do.

When I brought her back to the care home after our appointment, we pulled into the driveway and she asked “Is this my place?” I answered in the affirmative. She said thoughtfully, “They picked me up from another place, my friend’s house. I don’t know if I’m ready to be alone here.” Oh no, I told her, you won’t be alone. This is where you’re staying with the other ladies. “Good,” she said.

There is no other treatment for NPH, no drugs that have been found to be particularly effective. So we stay the course, basically. The neurologist is increasing her dosage of the Parkinson’s drug, which may still have some benefit for her balance and gait (so far it doesn’t seem to be doing much), and she’s staying on Namenda in the hopes of slowing the mental deterioration. Dr. O said that it’s likely she will worsen considerably “in a couple of years” and require a higher level of care. But she’s turning 86 tomorrow, she has congestive heart failure, atrial fibrillation and chronic kidney disease (either stage III or stage IV)… and she might only have a couple years left here anyway.

So I’m really just hoping that the drugs will keep her symptoms in check and give her a couple of pleasant  years at this wonderful care home with the friendly residents and caring, compassionate staff.

We make a good team

I stopped by to see Mom after work today – to drop off some Ensure and some of the flavored creamers she likes for her coffee and just to check on how she was doing. I stayed for about half an hour, just sitting and holding hands while she watched the 5:00 news with some of the other residents.

During a commercial, she turned to me and said “I’m glad we have each other.”

“Me too!” I said, with a big smile and a squeeze of her hand.

She commented on all the things that have happened to her in the last year, adding that “when you’re in the hospital, you NEED family.” I told her that I wished we had more family close by, and she smiled and said “You’ll do.”

“Yeah,” I answered. “We make a pretty good team, don’t we?”

“I have to move out of here…”

I had a stressful Monday, from computer problems the first 90 minutes of my workday right up to leaving work and finding my car in the garage with a flat tire. Thankfully, I was able to get the tire fixed relatively quickly and inexpensively. I picked up takeout for dinner because I was in no mood to cook.

Got home and grabbed the phone to call Mom while I dished up the shrimp with lobster sauce and poured a glass of wine.  Conversation begins like this:

“Hi, Mom.”

“Hi, sweetie! How are you doing today?”

“Better now. It was a stressful day, but it’s all good. How are you doing?”

“Oh, I’m doing pretty good. But I’m going to have to move out of here…”

I had about two seconds for my heart to drop into my stomach, thinking “Oh God, not this! Not today! What could have happened? She’s been so happy there…” — and then she continued,

“… because people are watching TV and I can’t really hear you.”

“Oh! You want to move into the other room where you can talk better? OK, I’ll hold on.”

Huge sigh of relief. It’s all good.

An Attitude of Service

The last hymn we sang in church today was Make Me a Servant:

Make me a servant, humble and meek,
Help me to lift up those who are weak

As I sang that second line, I felt my throat tighten and my eyes sting with tears. How very apt, especially after I had literally helped lift my mom to her feet several times during the service.

I also had to take her to the church bathroom twice, right before the service and again in the middle, causing us to miss most of the sermon. While we were in there the second time, she commented wryly that “Something’s wrong when taking care of your mom becomes more trouble than taking care of a toddler.” I just smiled and tried to shrug it off, but I was pretty frazzled… especially when I had to run to my car, parked a block away because we got there too late to claim one of the few parking spaces behind the church that are reserved for the elderly and handicapped, to get her a clean pair of disposable underwear.  Maybe I should start carrying a diaper bag, just as if she really was a toddler.

She has lost twenty pounds in the last couple of months. It feels like she’s wasting away before my very eyes, and it frightens me. I vacillate between being stressed out (about her health, about finances, about all the responsibilities that fall on me) and just being grateful for every single moment I get to spend with her.

I’m working on my attitude toward all of this, trying to focus on the gratitude part and cultivate a spirit of loving service. Earlier this week I had thought to make my next blog post in praise of the caregivers at her new home, how they go above and beyond what I had previously come to expect of caregivers. Everything they do, even when their residents are querulous, is done with patience and a smile. Nothing seems to rattle them. They take it all in stride, just smile and calmly attend to the needs of the moment. This is what I’m working on, what I’m striving for.

This work, being a caregiver for my mom, this is the work of my soul right now — tempering and shaping my spirit for whatever is to come next. Even when I feel resentful, I know this is where I’m supposed to be right now, what I’m meant to do. I have no idea how much longer I’ll have this job, or what I’ll do with my life when this phase of it is over. So for right now I’m really trying to stay in the moment, to enjoy the little things like holding Mom’s hand in church, and to be grateful for the opportunity to be of service.