It’s enough just being in the same space

Tomorrow I leave for my 9-day camping retreat. I wanted to spend some time with Mom before I left, but I’ve had so much to do to get ready for this trip that I haven’t had a spare minute. My compromise was to pick her up after work yesterday and bring her to my apartment to keep me company while I worked.

When I arrived to pick her up, she was reading the new Jan Karon novel that I bought her for her birthday and I suggested she bring it along. On the way over I bought her a chocolate milkshake, since I knew she’d ask for coffee or something sweet and I didn’t have either on hand. She was quite happy sitting and reading on my couch while I cleaned the kitchen. As she put it, “We don’t always have to be talking to enjoy each other’s company. It’s enough just being in the same space.”

After my husband died in 2010, I went to stay with my mom for a few months. I remember what a comfort it was just having another person around, even if we were at opposite ends of the apartment and didn’t talk for hours at a time. I’ve grown to love living alone (with my cat), but Mom never did get used to it after Dad died. I think that’s one of the reason she’s so happy at the board and care, because she is literally never alone there.

We sat on the couch and talked for a little while. Mom reached over to my end table and picked up a framed photo taken on her 79th birthday – the very last picture of me with both of my parents, on my last visit to Arizona before my dad died. “I don’t remember him looking this old,” she said, “with all that gray in his hair. I know he was older when he died, but in my memories he’s young.” We talked about Dad and shared some memories. It felt good to make that connection.

Three of Us 2007

We also talked about my upcoming trip – several times. And every time I mentioned something about it, she would ask me “Where are you going again?” I lost count at the seventh time in less than two hours. She’s been doing better with her memory lately, so that was just a little bit disconcerting.

When I dropped her off back at the board and care, I picked up the notepad she keeps beside her chair and wrote her a note explaining when I was leaving, where I was going and when I would be back. I signed it “I love you, Mom!” I hope that if she starts to wonder why she hasn’t heard from me, she’ll think to look at it. And I hope the next 9 days go by quickly for her…

… though not TOO quickly for me. I want to relish every unplugged minute of freedom to just take care of myself.

What a difference a year makes

One year ago my mom was diagnosed with normal pressure hydrocephalus (NPH) as the cause of her dementia and balance/mobility issues. She was perpetually confused, couldn’t remember basic things like where she lived or what season of the year it was. At the time she was also recovering from a serious infection and had such severe edema that she couldn’t fit shoes on her swollen feet. She was not sleeping well at night and wanted to stay in bed all day. Walking farther than across the room tired her out. She had lost twenty pounds in three months, and I felt like she was wasting away in front of my eyes.

Yesterday Mom had her annual check-up with her primary care physician and the news was all good. Her weight has been stable (at about 134) for six months. Her heart function is good and the edema is long gone. In the mini mental exam, she correctly answered the year, the season and the day of the week. When asked what state she lives in, she automatically said “Arizona” (where she lived for 20+ years) but instantly caught herself and added “No, I live in California now.”

When the doctor asked her how she’s been feeling, she answered with a smile, “I feel great! For my age, I think I’m in remarkably good health.” Compared to this time last year, it really IS remarkable. You can see it here, comparing her birthday photo this year with the one we took last year.

Mom Then and Now

A year ago I was anxious about leaving her for a weekend to attend my niece’s graduation. At the end of this month, I’m taking a real vacation – nine days at a campground without internet connection or cell reception, truly unplugging from my job as caregiver for the first time in three years. I’ve made arrangements for someone to take her to church, for a friend to check on her mid-week and for another friend to be on call in case of any medical emergencies. But I’m not worried. She’s healthy and happy, and I know she’ll be just fine while I’m gone.

What a difference a year makes!

New blouse

Wonders of Technology

My mom’s family holds a family reunion every year on the Sunday of Memorial Day weekend. Mom was disappointed that I couldn’t take her this year, having neither the vacation time nor the funds after my surgery. So I invited her to spend the day with me and asked my aunt to call us when they were all gathered together.

Mom and I had a nice day. We went to church, then she came to my apartment (the second time this month that she’s climbed the eight stairs into my building – yay for exercise) and we ate a stew I’d prepared for lunch, and then we played Scrabble. Mom won two out of three games, which makes me happy.

But the highlight of the day, for both of us, was the fifteen minutes we were able to join the family reunion via Skype video chat. It was Mom’s first experience with such a thing, and as we sat side-by-side on the couch looking at a blank computer screen on the ottoman in front of us, she kept saying “What are we doing here?” There were a couple of technical glitches, but then we were looking at my aunt and cousin smiling and waving at us, and Mom was grinning like a kid in a candy store. There were some 30 relatives in my cousin’s backyard and the adults all took turns gathering around to say hello. It must have been difficult for them to hear our voices coming out of the tiny tablet speaker with all that hubbub around them, but Mom just leaned closer to my laptop and shouted at the screen. It reminded me of people shouting into the mouth piece of those antique telephones in old movies. Mom can remember when those were a new invention, when only a couple families in town had a telephone and you had to use a party line. She was delighted with the video call technology and kept repeating “This is a new experience for me!”

One of the traditions of the family reunions is singing around a campfire. They hadn’t gotten to the singing yet, so my aunt and three or four of my cousins gathered round in front of the screen and warmed up their voices with that old children’s song Paw-Paw Patch. “Where oh where oh where is Dorothy? Way down yonder in the paw-paw patch.” Mom sang along happily and we all laughed. And then they sang Happy Birthday to her, an early wish for her 87th birthday coming up in a couple weeks.

Driving home, she told me, eyes shining, “This was a wonderful day! Being able to see everyone like that, it was almost as good as being there.”

Why didn’t I think of this sooner? Such a simple thing, this miracle of technology, and it brought her so much joy.

This entry was posted on May 24, 2015. 1 Comment

Brownies for everyone

Wednesday will be two weeks since I had my gallbladder removed. The outpatient laparoscopic surgery went very well, no complications, but the first week of recovery was pretty rough. I’m still not sleeping well, and it’s only in the last couple of days that I’ve started driving and getting out of the house for more than a walk around the block. Today I made my first visit to Mom in 13 days.

I made a pan of brownies (from a mix) a few nights back when I was bored and craving chocolate and, because I do NOT need to eat an entire pan of brownies by myself, I packed up most of them to take to Mom. I had to stop at Walmart and pick up a prescription for her on the way, so while I was at it I stopped in Starbucks and got her some “fancy coffee” (a vanilla latte) to have with her brownies.

Mom was, as usual, in her recliner in the TV room with the other ladies. Her face lit up when I handed her the coffee and showed her the brownies. She ate one, licked her fingers appreciatively, and then leaned over to her roommate in the chair next to her, tapping her on the arm and gesturing toward the Tupperware container in my hands. “Have one!” I passed the brownies to Yoko, who took one carefully and said, with a big smile, “Thank you.” In all the many times I’ve visited, it’s the first time Yoko has ever spoken to me. Usually she just smiles and nods, and I wasn’t even sure if she understood English.

The three wheelchair-bound residents were all seated around the dining room table, and I saw one of them turn her head to see what I was doing. I smiled and brought the brownies over to the table. Though none of those ladies speak much, and two of them need assistance to eat, their smiles said it all. Chocolate is a universal language.

After I’d handed out brownies all around, I returned to my seat next to Mom. “Thank you,” she said quietly. “I don’t have anything to share around except when you bring something.”

We sat and talked for a little while, about my surgery and about my brother’s recent visit to her, and then I suggested that we play a game of Scrabble. The staff made room for us at the end of the dining room table while I brought the game from Mom’s room. We only play a couple times a month now, so Mom always needs a little prompting at the start about how many tiles to draw and what to do with a blank one… but once she gets going, she still plays as well as ever. We played two games. I won the first by three points, she won the second by two.

She’s always enjoyed Scrabble but I don’t think I’ve ever seen her have so much fun with a game. Her eyes were sparkling and she got enthusiastic about every good play, whether it was hers or mine. After she played a Z on a Triple Letter Score and got a 42-point word, she did a little dance in her seat. It made me so happy to see her like that, I hated to stop at two games… but my surgery area had started to ache and I needed to get home and lie down with an ice pack.

I left the brownies on the little end table by her chair and reminded the staff, who had declined them earlier, that they were for everyone.

Two Scares in Two Weeks = Too Many!

Early Sunday morning, February 8, I got a call from my sister in Colorado. My oldest niece, who is in her first year of college here in California, was in a hospital with a fractured skull following a surfing accident. I called the hospital, who confirmed that she was still in the ER and that I would be allowed to visit, and arranged for a friend to go with me. All that I knew when we left for the hospital was that my niece was lucid and able to talk. I clung to that on the 90-minute drive down, praying that her ability to talk (and even joke) meant no brain injury. When I arrived at her bedside, one of the first things she did was wiggle her fingers and toes for me to show me that she wasn’t paralyzed. Thank God!

She was incredibly fortunate. A hairline fracture at the base of her skull, two fractures in her C1 vertebrae – but no brain injury, no paralysis, no need even for surgery to repair the bones. The neurosurgeon got her fitted for a neck brace, which she’ll wear for about six weeks to allow the bones to heal themselves. I spent most of two days in the hospital with her, until her Mom could get a flight from Denver. Then I went back to work, exhausted but grateful.

Last Wednesday night, I turned my phone on at the end of my evening class to find multiple messages from the owner of my mom’s board and care. Call me as soon as possible. Gulp.

Mom had a nosebleed that wouldn’t stop and the blood was draining down into her throat. The caregivers were worried that she might choke. The owner had taken her to the ER. I jumped in my car and met them there. The nosebleed had mostly stopped by the time I arrived, and I wondered if we were going to waste 4-6 hours at the ER for nothing… but no sooner had they taken her into the back to get her vitals and medical history, she vomited a dark bloody substance into her lap. Twice.

I was horrified at the sight of it. And I saw the alarm in the eyes of the nurses and techs, who rushed her to a bed in the back to get her hooked up to the monitors. Her blood pressure was dangerously low. For the second time in two weeks, I faced the possibility that everything could be coming unraveled in an instant. I didn’t know what vomiting blood might mean, but it didn’t look good. And I was especially worried because I was scheduled for surgery myself in just one week – who would take care of her if we were both in the hospital at the same time?

Thankfully, again, we were lucky. Her labs checked out just fine, her blood pressure returned to her high normal range, and there were no further symptoms during the three or four hours they kept her for observation. The doctor concluded she had simply swallowed blood that was trickling down from her nosebleed, and her stomach rejected it.

It was a long night. We had been taken to a room in the back of the ER, so I didn’t see how much activity was going on up front, but apparently they were very busy. After the labs came back and the doctor paid an initial visit, we were pretty much ignored. Mom complained of a bad taste in her mouth (no wonder!), but when we asked for water or ice chips none were forthcoming. I did manage to track someone down to get her a blanket because she was shivering. The blanket they brought was heated, which helped her get some rest for a while. When she got cold again, I put her corduroy coat over her for some extra warmth. And we waited…

It was 1:30 a.m. by the time we were given the OK to take her home. And the miracle of all of this is that the owner of the facility (AND her husband, who had driven her over to check on Mom and then brought them both to the ER) stayed there with us until the very end – and then they took her home, so that I could go home myself and get some sleep. When this woman says “the residents are my family,” clearly she means it. Once again, I left a hospital feeling completely exhausted but deeply grateful.

Wednesday I go in for laparoscopic gallbladder removal. Mom has been doing fine – no more nose bleeds, more active than usual with my brother visiting – so I’m not worried. I also know now that if there WAS an emergency when I couldn’t get there, I can trust her new “family” to take good care of her.

Perspective

After a doctor’s appointment last week, Mom and I stopped at a CVS drugstore to pick up a few things. When she’s not feeling tired, she enjoys getting out and doing things – even if it’s just browsing a drugstore for ten minutes.

As I got out of the car, a middle-aged woman approached me, asking if I could spare any change. I brushed her off, saying “Not now but maybe when we come out.” She continued talking to me, explaining that she hates asking for money but she and her husband are both out of work and currently living in her mother-in-law’s garage – and when she saw me lifting the walker out of my trunk, she eagerly offered to help. “I’ve got it,” I said, “but thank you.” The woman explained that she wants to work and would be happy to do anything – wash windows, clean houses, walk dogs, yard work.

I wasn’t sure how Mom would react to her, having spent most of her life in smaller communities where this sort of situation is uncommon. I can still vividly recall her reaction to an older woman sitting in a motorized wheelchair by the side of a freeway off ramp a few months ago. “Why would they just leave her there?” she burst out. “That’s a terrible place to leave someone!” I quickly explained that I thought the woman had probably chosen to sit there to ask for money, though glancing in the rearview mirror I didn’t see her holding a sign… and she wasn’t close enough to the road to take money being handed from a car window without getting out of the chair…

Anyway, we went in to the drugstore and I picked up the few things we needed and let Mom buy a bottle of Tums that she didn’t need because they were on sale. We picked out some cookies for her to take home, too, since we’re still trying to keep her from losing any more weight. I rang up our purchases with my debit card and got $10 cash back.

As we left the store, I discreetly passed the ten to the woman who had asked for help. She glanced at the bill in her hand and burst out “Oh, thank you so much! I could hug you!” – adding quickly “But I won’t. I know most people don’t want to be touched by strangers.”

“You can hug me,” Mom said immediately, turning with a smile.

I nodded and smiled my assent. “She’s a hugger.”

The woman hugged my mom gingerly around the shoulders, as if she might break. And she kept smiling and waving to us as we pulled out of the parking lot.

I drove away thinking how very fortunate Mom and I both are, despite the increased burdens of her care costs over the last year. I’ve been frustrated lately with all the costs for my own health care and Mom’s medications and incidentals (Ensure, incontinence products, haircuts, etc.) that just keep adding to my credit card debt because there’s not sufficient monthly income to cover it all. But I have a job and I have credit cards, and neither of us needs to go without. And Mom’s monthly income is enough to cover her base level of care at a wonderful home, where she is happy and engaged. And that, to me, is priceless.

Girls of All Ages Have Drama

I read a great article (Mean Girls in the Retirement Home)  recently, and it got me thinking…

I didn’t witness out-and-out bullying at the two assisted living communities where my mom lived, but I definitely saw that there was a pecking order, with those who were still mentally sharp shunning those who were cognitively compromised. I used to worry about Mom being mistreated as her dementia advanced. So, first off, I’m thankful that we got her out of that dynamic and that she now lives in a homelike environment too small for cliques.

But I had noticed the last couple of times I visited that they’d moved the chairs in the TV room, separating Mom from her chatterbox friend Georgia… and that Miss Chatterbox (or, as Mom calls her, Miss Know-It-All) seemed quiet and sullen. The article got me to wondering if there had been some kind of Mean Girl drama. So when I took Mom to get her nails done yesterday, I asked her about it.

“Well,” she said. “I heard her talking about me and I didn’t like the way she described me, and I told her so.” The offending piece of description was something like “she does her own thing and doesn’t care about anybody else,” and Mom said “If that’s what she thinks of me, I don’t see how I can be friends with her.”

No one who knew my mom pre-dementia would ever describe her as someone who doesn’t care about others. She’s always been one of the kindest, most giving, most nurturing people I have ever known. So I can understand how being described in that way would sting. But I can also understand why Georgia, who appears to constantly need someone to listen to her and validate her, might be hurt if Mom started tuning her out so that she could focus on her crossword puzzles. Aside from the staff, my mom is the only person there capable of making intelligent conversation… so I suspect Georgia might be sorry she’s burned that bridge.

We never do outgrow the drama, do we? LOL Well, hopefully it will soon be water under the bridge.