Christmas Trip, Part 2: Ritual and Tradition

Every other year, all through my childhood, we spent Christmas in Ohio with my mom’s family. (On alternate years, my dad had to take his turn as the on-call anesthesiologist.) I looked forward to those family Christmases so much, I think I started counting the days in September. The big family tradition was a Christmas Eve potluck, the whole clan coming together at my Uncle Fritz and Aunt Ellen’s house. I fondly recall my cousin Betty’s delicious pies and singing Christmas carols all together and Uncle Fritz dressing up as Santa to hand out the presents. I remember, as my generation grew up and started having kids, how crowded that little house became — tables laid end to end from the kitchen all the way to the front porch — and how full of love and laughter it always was. I remember falling asleep on Christmas Eve next to my cousin Susan, with her brother camped out on the floor beside the bed so my parents could have his room. “Shhhhh!” he would say. “Did you hear that? It sounded like sleighbells!”

Until this year I hadn’t been back to Ohio at the holidays for over two decades. The torch has been passed to the next generation, and my cousin Frank and his wife are now the hosts for Christmas Eve. Over the years the exchanging of gifts has evolved into its own ritual. Everyone brings one gift and they are passed around the circle as my cousin Robby reads The Night Before Christmas. It was fun to see him in that role, to watch him be Uncle Rob to a whole new generation of cousins.

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After the story and the gift exchange came the carol singing, which has always been my favorite part of Christmas Eve. Songbooks were handed around and, as I heard my family’s voices raised together in song, I realized just how much I had missed being a part of that. I got a lump in my throat when, on a lyric about Mary with the babe in her arms, my eye fell on my cousin with her toddler daughter sleeping on her lap.

I think my favorite moment all night, though, was when the group skipped “O Christmas Tree.” My cousin Shellyn, sitting next to me, tried to insist that we sing it but wasn’t being heard… so I just started belting out “O Christmas Tree.” Shellyn and her sisters joined in, and we drowned out the other song until everybody was singing “O Christmas Tree.” For a few moments I was a teenager again, instigating with my cousins.

Mom loves the singing, too, and she loved seeing the whole family at once. And Betty’s pies are as good as ever!

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Me, Mom, and my Aunt Alice – Christmas Eve

 

I’m a big one for rituals and traditions, always have been. It makes me melancholy to consider that my particular branch of our family tree ends with me, that there is no next generation to whom I can hand down the boxes of my mom’s old family photos or into the toe of whose Christmas stockings I can place the traditional tangerine. But my cousins on Mom’s side are keeping the family tree healthy and I think our traditions are in good hands.

Christmas Trip, Part 1

Mom and I are in Ohio, staying with her sister for the next week. We arrived late Saturday night after a long travel day: flight from Burbank to Phoenix, rushing through PHX with a wheelchair attendant to just make our 3.5-hour flight to Cleveland, then a 90-minute drive in my cousin’s car. Mom was perky the whole way, unconcerned about the tight connection or the turbulence for the first hour of the second flight, chatting happily with her nephew as we drove. I was dead on my feet exhausted as I helped her brush her teeth and get into her pajamas, and asleep as soon as my head hit the pillow.

Yesterday I woke up before my body or brain were ready to function, worried about Mom waking up in an unfamiliar room and not knowing how to find the bathroom or her clean Depends. To my surprise, she was already up and sitting in an easy chair by the Christmas tree, working a crossword puzzle, completely comfortable. As I helped her get dressed, I asked if it had been disconcerting waking up in a strange room. She shrugged that off and told me “I’ve stayed in this room lots of times. It’s very familiar.”2015-12-20 14.35.57

We had a busy Sunday with lots of family dropping in and out all afternoon – drank too many cups of coffee and ate too many sweets – and Mom enjoyed every minute of it.

For the second night in a row, I slept as if sedated and had to drag myself out of bed to get Mom up. Being alert to her every need all day long takes it out of me. We were having cereal and coffee in the dining room when she looked at me and asked “Whose house is this?” I told her we are at Alice’s house and today is December 21, and she smiled happily. “It’s almost Christmas!”

Her feet were very swollen yesterday, likely from the long flights, so this morning I checked with her nurse and gave her a full 20 mg Lasix tablet instead of her usual half. She also had some digestive distress, which wasn’t fun for either of us since she didn’t make it to the bathroom on time. Luckily we have easy access to a washer and dryer. And nothing got messy that couldn’t be easily cleaned. I count that as a win. Also, thankfully, it passed quickly and she was soon feeling better. I’m also counting it as a win that I’ve remembered all four of her daily medication dosages on time for three days now. Better put reminders on my calendar in case I just jinxed myself by saying that.

I went out to run some errands with my aunt this afternoon and picked up some diabetic socks for Mom. Hopefully those will help with the swelling. I also picked up a bottle of Tylenol and a back pain patch for myself. I seem to have strained a muscle in my lower back, probably from bending over to roll a suitcase through the airport after the extendable handle came apart. It hurts to bend down or sit too long, and I feel like we’re quite the pair of frail old ladies right now… and all of this gives me a new level of respect for all the family caregivers out there who are coping with their own health challenges while caring for an elderly parent.

But it’s worth every minute of stress and aggravation, every twinge of aching muscles, to see her so happy and content here. And we haven’t even gotten to Christmas yet!

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No One

Yesterday was the annual holiday party at my mom’s care home. I stopped at the bank for crisp bills to put in the Christmas cards I was giving to the staff and arrived a few minutes late. Mom was sitting at a card table with two chairs, wearing a festive red top that was her Christmas gift from the owner of the facility. I kissed her hello and took the seat across from her. Looking around, I was happy to see that no one was sitting alone and each of the residents had at least one visitor with them at their table.

It’s a weird sort of party because the visitors never seem to talk to each other, just to the loved one they’ve come to visit and to the staff. But during dessert, a slightly built older woman approached our table while my mom was in the bathroom. “You’re Dorothy’s daughter, aren’t you?” I nodded and we introduced ourselves, shaking hands. “They tell me your mother is very kind to Jenny and talks to her. Thank you.” I shrugged off her thanks, telling her that my mom is very social and is happy to have someone to chat with.

The woman, who I initially guessed might be Jenny’s sister, shook her head sadly. “It’s so hard to see her like this. Jenny was always so well informed, and now…” She trailed off and I nodded sympathetically. It is hard. The woman went on to tell me that Jenny was a librarian for many years and, back in the 1970s, a labor organizer. “I was the head librarian,” she explained. “She worked for me for many years. After she retired, she worked part-time at the senior center until a couple of years ago.” She further explained that Jenny has no family except two brothers, one in Seattle and the other overseas.

I was touched that she had come to visit Jenny, to share the holiday party with her, despite her apparent discomfort with the dementia that has reduced her articulate, well-informed colleague to a state of childlike dependence. I was struck by, as hard as it is to deal with a parent or grandparent with dementia, how much harder must it be to see a PEER in that state. There but for the grace of God, and all that.

Later, as I was getting ready for my next holiday party, I kept thinking about Jenny who has no family around, no one to look out for her best interests. I don’t have kids, or a husband anymore, so this could well be me someday. It’s a sobering thought. I don’t know how Jenny ended up in this board and care, but I’m glad that she did because I know the staff, and I trust that she’s getting the same good care that my mom gets — even without a daughter to check up on her and advocate for her. Still, she must get lonely. When we get back from our holiday travels, I’m going to make a point to check on Jenny whenever I visit.

 

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Mom and me: Don’t we look festive?

 

 

 

Ghosts of Thanksgivings Past

It was three years ago this week that I started this journey with my mom, as Facebook helpfully reminded me – calling up in its Memories section those angst-ridden first posts about her car accident, the fear of a possible stroke, the irrefutable discovery of dementia symptoms. I remember how scared I was for her, how helpless I felt being far away, how much I worried about making the right choices on her behalf. I didn’t feel up to this new level of responsibility that had been thrust on me overnight.

Two years ago, Mom was recovering after another hospitalization and I didn’t know if she’d be out of skilled nursing in time to spend Thanksgiving with me. She entered my apartment in a wheelchair, my friend having thrown out his back helping me haul her and the chair up the seven or so steps into my building, spent much of the visit sleeping and only ate a few bites of the turkey dinner. I thought I’d have to move into an accessible building if I were ever to bring her to visit me again. When I drove her back to the assisted living hotel the next day, we found the roof leaking and she had to be moved into another room – and I fretted and stressed about leaving her there alone.

How thankful I am that this year she could climb the steps on her own (with me at her side, of course, holding her steady) and had the energy to enjoy a lively Thanksgiving dinner with my friends, even after a relatively late night at the Thanksgiving Eve service at her church. She ate heartily and said many times how much she enjoyed herself, though she did retreat to the sofa with a crossword puzzle as the evening wore on. (One of the advantages of old age, I suppose, is you don’t have to pretend to be engaged in a conversation that isn’t holding your interest. You can just go do something else!)

And I am thankful for my friends, who make a point to spend time talking to her and treat her kindly and don’t laugh when she talks or sings to herself while working her puzzles.

We got off to a shaky start today because she said she didn’t need to visit the bathroom and I didn’t insist, and then she had an accident. She seems so much like her old self these days, I sometimes forget just how much help she still needs. But I got her cleaned up and dressed in fresh clothes, and  after we had pumpkin pie and coffee for breakfast she insisted on helping me with the dishes. Then she took a nap on the couch while I got some work done on my computer.

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When I took her home this afternoon, it was to a place that has truly become her Home, a place I am thankful for every single day. Life is good, and we are truly blessed, both of us. So thankful.

 

 

 

Breaks My Heart Every Time

There’s a new resident at my mom’s care home. I’ll call her Jenny. The first couple of times I met her, she seemed so together – introduced herself, remembered on my next visit that I was Dorothy’s daughter and she’d met me before, asking my mom how it went at the doctor when we returned from an appointment – that I almost wondered why she needs to be in board and care. She walks with a walker, but (like my mom) seems to get around really well with it. I was happy that my mom would have someone at the house to chat with besides the caregivers, who are really kind and engaged but too busy to just sit and visit with her.

Then one time when I brought Mom home from an appointment, Jenny said to me “I know you! You live next door to Bert, don’t you?” I shook my head. No, sorry, you’re thinking of someone else. “But I know I’ve seen you there,” she insisted. “I know you!” I told her again, you’re thinking of someone else. I don’t know Bert. Mom spoke up then, saying, “This is my daughter. You’ve met her before.”

Jenny may get confused about who I am, but she always seems happy to see me when I come in. Whoever she thinks I am, I’m glad that person is someone she likes.

This afternoon when I brought Mom home from church, Jenny met us just inside the door. “Will you do me a favor?” she asked me. I was busy helping Mom, who had taken off her sunglasses and was asking for her regular glasses from her purse, so I didn’t respond. Jenny was saying something about someone she hadn’t seen in a long time. Maria, the head caregiver, held up a pill bottle and started talking to me about one of Mom’s medications that needs to be reordered.

Jenny was still talking to me, looking intently at me from a few yards away, but I hadn’t heard a word she’d said. She started to cry, loudly, like a small child. I looked helplessly from one caregiver to the other, hoping one of them would do something, but they were paying Jenny no mind. “I’m sorry to be a crybaby,” she was saying, sniffling. I felt horrible.

I kissed my mom goodbye, told Maria that I would request a refill of that medication, and headed for the door. Jenny was between me and the door. She stopped sniffling and looked at me with hopeful eyes. “Will you drive me to the party?” she asked me. “It’s not far from here, just over on Van Nuys.”

I put my hand on her shoulder and said, as gently as I could, “I’m so sorry that I can’t.”

Jenny began to cry again, almost wailing, “But I haven’t seen them for so long!” I patted her shoulder helplessly and then moved toward the door.

As the door was closing behind me, I was relieved to hear Maria saying “What’s the matter, Jenny?”

If my mom was crying like that, it would break my heart. But she’s my mom and maybe there would be something I could do to make it better. I never know how to respond when it’s another resident. And it breaks my heart just the same.

What’s new on the medical front

After 24 hours in the hospital for observation and follow-up visits with a geriatrician, her cardiologist and (finally today) her neurologist, here’s the latest. The hospital cardiologist ruled out the need for a pacemaker. After reviewing the results of the heart monitor overnight, he concluded that her heart rhythm is not slow, just irregular. Both he and her regular cardiologist wanted to blame a medication called Sinemet that she takes to help with her gait and balance, because one of the side effects of Sinemet is a drop in blood pressure. That’s what they think caused her to faint in church that day – either a sudden drop in blood pressure or something called a vasovagal syncope, caused by straining on the toilet. Apparently that’s a common cause of fainting in the elderly. (File that under: Things I never wanted to know about getting old.)

She was discharged with no changes to her medication. At the cardiology follow-up, he suggested asking the neurologist about reducing the Sinemet dosage. But he didn’t seem particularly concerned about a single fainting episode and said it was fine for us to wait until the September appointment with the neurologist to review that.

The neurology appointment got postponed by two weeks because the Medicare Advantage HMO failed to authorize it in time (don’t even get me started on that), but we finally saw Dr. O today. She was impressed by Mom’s energy level, how well she’s walking (no shuffling, easily navigating corners with her walker) and the lack of tremors. Her one concern was that Mom’s blood pressure was high (170/60), in spite of all those blood pressure medications she’s on.

Dr. O didn’t give her one of the standard memory tests this time; instead, she just made conversation, asking her what she does all day. Mom replied that she lives in an elderly care home with some very nice people. Dr. O asked if there are activities, do they watch a lot of movies? Mom: “I entertain myself by doing puzzles and reading, mostly. There aren’t a lot of activities, but sometimes we all sit around the table and play… something.” She looked at me hopefully, expecting me to fill in the missing detail, but I’ve never been there when they were playing a game at the table. I asked if they still do exercises in the morning, and Mom said yes and demonstrated the type of seated exercises they do. Dr. O seemed satisfied with that, though I know she’d be happier if Mom didn’t spend 98% of her day sitting.

When asked how she’s been feeling, Mom replied that she’s doing great. I told Dr. O about the fainting episode and resulting hospital visit. When I raised the question about the Sinemet, Dr. O shook her head and told me that with Mom’s BP as high as it is, she doesn’t think it’s having a significant BP-reducing effect — certainly not enough to warrant removing a medication that has made such a positive difference in her mobility and energy level.

Dr. O is ordering a carotid artery ultrasound to check for narrowing or partial obstruction of the carotid arteries. This was not a comfortable thing for me to hear, since a blockage of the carotid often leads to heart attack or stroke, but I’m glad she’s getting tested for it. According to WebMD, one of the first indications is often a TIA, which I am pretty damn sure is what happened to her when she ended up in the hospital three years ago and we started down this road together. You’d think they’d have done this carotid artery ultrasound back then, but nothing about the slipshod medical care she got back in that small mountain town surprises me anymore. It’s getting checked out now and that’s what matters. For all my frustrations with the administrative aspects of her medical group, I am truly grateful for the great team of doctors she has now.

Next week, it’s the kidney specialist.

Not how I expected to spend my Sunday

I’m writing this perched at the foot of my mom’s hospital bed. We were at church this morning and the service was just starting when she said she had to use the bathroom. She was sitting on the toilet and I was crouched on the floor in front of her, helping with her pants and shoes, when she suddenly grabbed the handrail and slumped sideways against the wall.

“Are you OK?” I asked. No response. “MOM, are you OK?!”

The third time I asked, she mumbled something unintelligible. It sounded like her mouth was full of marbles. She was leaning so far over, I was afraid she’d slide right off the toilet and hit her head. I stood in front of her, holding her arms, tried to get her to sit straight again but she kept slumping back against the wall.

I thought she might be having a stroke. I was terrified. I told her, as calmly as I could, that I needed to take her to the hospital. It was probably only a moment or two before she said, softly but clearly, “I’m OK.” It felt like hours. I asked if she thought she could stand so that I could pull her pants up. Holding onto me and the handrail, she managed to do that. I got her dressed, seated on the seat of her walker, where she slumped forward again, and rolled her out of the bathroom. Then I ducked into the sanctuary and saw the pastor’s wife standing just inside the door. “I need help!” I told her. “I have to get my mom to a hospital.”

The pastor’s wife brought two men to help, who between them were able to lift Mom’s walker down the two steps to street level. One of the men scooped Mom up like she was a little girl to put her into my car. I pulled out my phone to get directions to the nearest hospital, and my hands were shaking so much I could hardly type. I still didn’t know what had happened to my mom, and all I could think was that I was wasting valuable seconds.

Thankfully, the hospital was less than five minutes away. Miraculously, there was no line in the ER when we arrived. They took her back right away, took her vitals and history, got her into a room where she was seen by the doctor. Everything looked fine except her heart rhythm, which he described as “very slow and irregular with long pauses.” He said that would explain her fainting spell and also the periodic episodes of lightheadedness she’s been having for the last six months or so. She was admitted for observation. They are making some changes to her medication, which might correct the issue. If it doesn’t, the next step is a pacemaker.

By the time we got up to her room in the cardiac ward, she was feeling like her usual self. They brought her a lunch tray and she ate heartily. Same with dinner. She doesn’t remember anything that happened at church and keeps asking me why she’s in the hospital when she doesn’t feel sick, but she’s lucid and her voice is strong… and I am so SO thankful that it was not a stroke.

And even though she probably took five years off my life with that scare this morning, I am hopeful that getting this properly diagnosed and treated is going to improve the quality of her life – and, by extension, the quality of mine.