Tag Archive | dementia

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.

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.

 

FullSizeRender

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.

IMG_3042

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.

 

 

 

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

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.

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.