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Turning Slowly

I didn’t see Mom over the weekend because I was back-to-back-to-back with other commitments. Until recently, I felt so guilty if I couldn’t take her to church. But now half the time we (my niece or I) go to pick her up on a Sunday morning, she’s still in bed – even though we’ve given up on 9:30 Sunday school to give her an extra hour of sleep. So I  just called her caregivers and told them they could let her sleep in yesterday and I’d come by later.

After work today I dropped by with her rent check and the new lightweight “transfer” wheelchair. It’s going to be great. I sat in it for the hour that I visited with Mom, and it’s quite comfortable. It folds up nicely and is light enough that I can pick it up and carry it under one arm. (Well, maybe not under one arm with the footrests attached.) Mom looked great, bright-eyed and alert; and when I asked how her knees were doing, she said they’re not bothering her so much and showed me that she could bend the knees and stretch out her legs without pain.

I noticed a couple of things that tell me things are changing, though.

Her memory, which has been on a plateau for these last couple years, seems to have slipped a bit further. She asked how my day was, and I regaled her with a story of the ridiculousness of my Monday at work. A brief pause, while I rub her calves and she looks at the TV, then she looks back up at me. “So, how was your day?” I found an unopened envelope on the table next to her bed from her sister, Alice, and handed it to her. She opened it up and read the letter out loud to me, two sides of one sheet of paper, typed in large print. She finished the letter, turned the page over to the first side, and said “Oh, I haven’t read this. Should I read it out loud?”

Also, she seemed to be having a little trouble reading parts of the letter, and I couldn’t tell if it was her eyesight (she does have macular degeneration) or if she was getting confused. I’m going to ask her caregivers if she’s still actually reading the pile of books on her end table. It may be time to quietly remove most of them and replace them with large print books. And if anyone has suggestions for a device to play audio books that an 89-year-old dementia patient can manage, please let me know.

Time for a Wheelchair

Mom was stable for a long time. She gets such good care where she lives, and we were in an easy routine, and I felt like I didn’t have anything to write about in this blog. So I let it go…

Earlier this year, I came to the difficult decision that I won’t be able to take her back to Ohio to visit family anymore. The long flights are just too difficult for someone with incontinence and dementia; the potential for a bad situation that would make the flight miserable for everyone was just too high. I agonized over making that decision, knowing it would mean she will never see certain members of her family again in this life… but the time had come. My first priority in caring for her is to keep her safe and to keep her out of distressing situations.

Today I realized that we’ve reached another milestone. Her legs have become so weak, she could hardly make it from the door of the house to the car parked in the driveway, even with her walker. I took her to have brunch with her two granddaughters, my nieces, and parked directly across the street from the door to the restaurant. That short of a walk was too much for her, and she had to stop and sit on a bench in front of the restaurant. She’s gone from a slightly shuffling gate to dragging herself along, leaning so heavily on the walker that I kept my arm around her in case she toppled over. When we got back to her care home, she had barely taken two steps from the car before she told me she was afraid she was going to fall. I walked behind her, holding onto her hips with both hands, reassuring her that I wouldn’t let her fall… But she faltered at the single step up to the door of the facility, and I had to ring the bell for help. Mom was bent nearly double over the walker when the door opened, and the caregiver took one look at her and called for a wheelchair.

Once we’d gotten her comfortably settled in her recliner, I quietly thanked the caregiver and told her that I think I need to buy a wheelchair. She nodded and said gently, “It’s time.”

This entry was posted on July 16, 2017. 7 Comments

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.